Guardian Ad Litem Report on Terri Schiavo (everyone should read this)

A REPORT TO GOVERNOR JEB BUSH AND THE 6TH JUDICIAL CIRCUIT IN THE MATTER OF THERESA MARIE SCHIAVO Pursuant to the requirements of H.B. 35-E (Chapter 2003-418, Laws of Florida) and the Order of the Hon. David Demers, Chief Judge, Florida 6th Judicial Circuit regarding the appointment and duties of a Guardian Ad Litem in the matter of Theresa Marie Schiavo, Incapacitated. Respectfully Submitted Jay Wolfson, DrPH, JD, Guardian Ad Litem for Theresa Marie Schiavo 1 December 2003

On 31 October 2003, pursuant to the requirements of Florida H.B. 35-E (Chapter 2003- 418, Laws of Florida) and the order of the Hon. David Demers, Chief Judge, Florida 6th Judicial Circuit, a Guardian Ad Litem was appointed for a period of thirty days with the following charge: "…make a report and recommendations to the Governor as to whether the Governor should lift the stay that he previously entered. The report will specifically address the feasibility and value of swallow tests for this ward and the feasibility and value of swallow therapy. Additionally, the report will include a thorough summary of everything that has taken place in the trial court and the appellate court concerning this case."

The entire court file of thirteen years, including items of evidence, has been reviewed and studied, with particular attention given to decision points in the case history that are reflected in motions to and orders by the Court. The case review has included clinical and medical records, discussions with members of the family, caregivers, and with medical, legal, bioethical and religious practitioners and scholars and the conduct of independent research into the substantive issues in this case. The GAL has met regularly with Ms. Schiavo, his ward.
[break] Theresa suffered a cardiac arrest. During the several minutes it took for paramedics to arrive, Theresa experienced loss of oxygen to the brain, or anoxia, for a period sufficiently long to cause permanent loss of brain function. Despite heroic efforts to resuscitate, Theresa remained unconscious and slipped into a coma. She was intubated, ventilated and trached, meaning that she was given life saving medical technological interventions, without which she surely would have died that day.

The cause of the cardiac arrest was adduced to a dramatically reduced potassium level in Theresa's body. Sodium and potassium maintain a vital, chemical balance in the human body that helps define the electrolyte levels. The cause of the imbalance was not clearly identified, but may be linked, in theory, to her drinking 10-15 glasses of iced tea each day. While no formal proof emerged, the medical records note that the combination of aggressive weight loss, diet control and excessive hydration raised questions about Theresa suffering from Bulimia, an eating disorder, more common among women than men, in which purging through vomiting, laxatives and other methods of diet control becomes obsessive.

Theresa spent two and a half months as an inpatient at Humana Northside Hospital, eventually emerging from her coma state, but not recovering consciousness. On 12 May 1990, following extensive testing, therapy and observation, she was discharged to the College Park skilled care and rehabilitation facility. Forty-nine days later, she was transferred again to Bayfront Hospital for additional, aggressive rehabilitation efforts. In September of 1990, she was brought home, but following only three weeks, she was returned to the College Park facility because the "family was overwhelmed by Terry's care needs."

On 18 June 1990, Michael was formally appointed by the court to serve as Theresa's legal guardian, because she was adjudicated to be incompetent by law. Michael's appointment was undisputed by the parties.

The clinical records within the massive case file indicate that Theresa was not responsive to neurological and swallowing tests. She received regular and intense physical, occupational and speech therapies.

Theresa's husband, Michael Schiavo and her mother, Mary Schindler, were virtual partners in their care of and dedication to Theresa. There is no question but that complete trust, mutual caring, explicit love and a common goal of caring for and rehabilitating Theresa, were the shared intentions of Michael Shiavo and the Schindlers.

In late Autumn of 1990, following months of therapy and testing, formal diagnoses of persistent vegetative state with no evidence of improvement, Michael took Theresa to California, where she received an experimental thalamic stimulator implant in her brain. Michael remained in California caring for Theresa during a period of several months and returned to Florida with her in January of 1991. Theresa was transferred to the Mediplex Rehabilitation Center in Brandon, where she received 24 hour skilled care, physical, occupational, speech and recreational therapies.

Despite aggressive therapies, physician and other clinical assessments consistently revealed no functional abilities, only reflexive, rather than cognitive movements, random eye opening, no communication system and little change cognitively or functionally.

On 19 July 1991 Theresa was transferred to the Sable Palms skilled care facility. Periodic neurological exams, regular and aggressive physical, occupational and speech therapy continued through 1994.

Michael Schiavo, on Theresa's and his own behalf, initiated a medical malpractice lawsuit against the obstetrician who had been overseeing Theresa's fertility therapy. In 1993, the malpractice action concluded in Theresa and Michael's favor, resulting in a two element award: More than $750,000 in economic damages for Theresa, and a loss of consortium award (non economic damages) of $300,000 to Michael. The court established a trust fund for Theresa's financial award, with SouthTrust Bank as the Guardian and an independent trustee. This fund was meticulously managed and accounted for and Michael Schiavo had no control over its use. There is no evidence in the record of the trust administration documents of any mismanagement of Theresa's estate, and the records on this matter are excellently maintained.

All court records were accessed and reviewed, including all items of evidence in the case. Extensive discussions were held with family members and caregivers along with the acquisition and review of background data and information from the case file to assist the Guardian Ad Litem in becoming as personally acquainted with his ward, Theresa Schiavo as possible, in the short time available. The Guardian Ad Litem has made numerous and frequent visits to Theresa at the hospice where she resides, including an arranged visit with her parents to observe interactions. The Guardian ad Litem has met with and discussed aspects of Theresa's case with hospice staff, physician cardiologists, gastroenterologists, internists, neurologists, neurosurgeons, trauma specialists, anesthesiologists, swallowing disorder specialists; speech pathologists specializing in rehabilitation, swallowing tests and swallowing therapy; and with clergy, elder law specialists, bioethicists, and health policy specialists. In addition to reading the nearly 30,000 pages of court records, the Guardian Ad Litem has conducted a review of the medical literature and has received thousands of unsolicited documents, sources of referral, claims regarding successful interventions, and wishes of good luck.

In 1989, the Florida Legislature permitted the withdrawal of artificial nutrition and hydration under very specific circumstances. In 1999, following extensive bipartisan efforts, life-prolonging procedures were redefined as "any medical procedure, treatment, or intervention, including artificially provided sustenance and hydration, which sustains, restores, or supplants a spontaneous vital function." It is noteworthy that the general principle of artificial nutrition as artificial life support that may be removed in terminal and even vegetative state conditions is reflected in nearly all state's laws and within the guidelines of end of life care enunciated by the American Conference of Catholic Bishops and other religious denominations.

These general principles are in no way intended to encourage or condone suicide or assisted suicide. But they reflect the acceptance of artificial nutrition as artificial life support that may be withdrawn or withheld as a matter of public policy, when these decisions capture the intentions of the person and with the premise that people should not be required to remain "artificially alive", or to have their natural peaceful deaths postponed and prolonged if they would otherwise choose not to, and that they should be allowed to die with dignity, and return, if their beliefs so accommodate, to God.

If persons unable to speak for themselves have decisions made on their behalf by guardians or family members, the potential for abuse, barring clear protections, could lead to a "slippery slope" of actions to terminate the lives of disabled and incompetent persons. And it is not difficult to imagine bad decisions being made in order to make life easier for a family or to avoid spending funds remaining in the estate on the maintenance of a person.

There is, of course, the other side of that slippery slope, which would be to keep people in a situation they would never dream of: unable to die, unable to communicate, dependent for everything, and unaware, being maintained principally or entirely through state resources – and for reasons that may relate to guilt, fear, needs or wants of family members, rather than what the person's best wishes might otherwise have been.

Justice Scalia has admonished us to rely upon and accept the role of state lawmakers and laws to address issues of this very nature. Though his point of reference was Missouri law relative to an evidentiary standard, his message remains that it is up to states to establish the rules and guidelines in these matters.

"I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field; that American law has always accorded the State the power to prevent, by force if necessary, suicide - including suicide by refusing to take appropriate measures necessary to preserve one's life; that the point at which life becomes "worthless," and the point at which the means necessary to preserve it become "extraordinary" or "inappropriate," are neither set forth in the Constitution nor known to the nine Justices of this Court any better than they are known to nine people picked at random from the Kansas City telephone directory; and hence, that even when it is demonstrated by clear and convincing evidence that a patient no longer wishes certain measures to be taken to preserve her life, it is up to the citizens of Missouri to decide, through their elected representatives, whether that wish will be honored. It is quite impossible (because the Constitution says nothing about the matter) that those citizens will decide upon a line less lawful than the one we would choose; and it is unlikely (because we know no more about "life-and-death" than they do) that they will decide upon a line less reasonable." (emphasis added) Cruzan v. Director, MDH, 497, U.S. 261 (1990)

Justice O'Connor reinforces the High Court's view that it is to the states and their legislative process that the Supreme Court turns to grapple with these matters:

"Today we decide only that one State's practice does not violate the Constitution; the more challenging task of crafting appropriate procedures for safeguarding incompetents' liberty interests is entrusted to the "laboratory" of the States, New State Ice Co. v. Liebmann, 285 U.S. 262, 311 (1932) (Brandeis, J., dissenting), in the first instance." Cruzan v. Director, MDH, 497, U.S. 261 (1990)

And even if we are not happy with the result in a case – or the application and interpretation of the law, we are reminded by Chief Justice Renquist, writing for the Court that general rules of law – indeed, even the law itself, is neither flawless nor faultless:

"But the Constitution does not require general rules to work faultlessly; no general rule can." Cruzan v. Director, MDH, 497, U.S. 261 (1990)

Evidence regarding the persistent vegetative state consisted of highly credible medical testimony and documentation reflecting both early and recently performed neurological examinations and a case history that included early swallowing studies conducted multiple times nearly ten years ago.

Three, independent sets of swallowing tests were performed early in Theresa's medical treatment: 1991, 1992 and 1993. Each of these determined that Theresa was not able to swallow without risk of aspiration (and consequent infection).

The ability to orally ingest food and water – to swallow substances other than saliva, is predicated on a level of cognitive capacity. Without cognitive capacity, the intentional act of oral nutrition and hydration is likely to lead to aspiration. Eating and drinking are not unconscious processes. Therefore, Theresa's neurological status is directly linked to her ability to swallow.

A particularly disarming aspect of persons diagnosed with persistent vegetative state is that they have waking and sleeping cycles. When awake, their eyes are often open, they make noises, they appear to track movement, they respond to deep pain, and appear startled by loud noises. Further, because the autonomic nervous system those brain related functions are not affected, they can often breathe (without a respirator) and swallow (saliva). But there is no purposeful, reproducible, interactive, awareness. There is some controversy within the scientific medical literature regarding the characterization and diagnosis of persons in a persistent vegetative state. Highly competent, scientifically based physicians using recognized measures and standards have deduced, within a high degree of medical certainty, that Theresa is in a persistent vegetative state. This evidence is compelling.

Terri is a living, breathing human being. When awake, she sometimes groans, makes noises that emulate laughter or crying, and may appear to track movement. But the scientific medical literature and the reports this GAL obtained from highly respected neuro-science researchers indicate that these activities are common and characteristic of persons in a persistent vegetative state.

In the month during which the GAL conducted research, interviews and compiled information, he sought to visit with Theresa as often as possible, sometimes daily, and sometimes, more than once each day. During that time, the GAL was not able to independently determine that there were consistent, repetitive, intentional, reproducible interactive and aware activities. When Theresa's mother and father were asked to join the GAL, there was no success in eliciting specific responses. Hours of observed video tape recordings of Theresa offer little objective insight about her awareness and interactive behaviors. There are instances where she appears to respond specifically to her mother. But these are not repetitive or consistent. There were instances during the GAL's visits, when responses seemed possible, but they were not consistent in any way.

This having been said, Theresa has a distinct presence about her. Being with Theresa, holding her hand, looking into her eyes and watching how she is lovingly treated by Michael, her parents and family and the clinical staff at hospice is an emotional experience. It would be easy to detach from her if she were comatose, asleep with her eyes closed and made no noises. This is the confusing thing for the lay person about persistent vegetative states.

Theresa's neurological tests and CT scans indicate objective measures of the persistent vegetative state. These data indicate that Theresa's cerebral cortex is principally liquid, having shrunken due to the severe anoxic trauma experienced thirteen years ago. The initial oxygen deprivation caused damage that could not be repaired, and the brain tissue in that area continued to devolve. It is noteworthy to recall that from the time of her collapse, and for more than three years, Theresa did receive active physical, occupational, speech and even recreational therapy. There is evidence early in her records of care that she said "no" during physical therapy session. That behavior did not recur and was not further referenced.

In the observed circumstances, the behavior that Theresa manifests is attributable to brain stem and forebrain functions that are reflexive, rather than cognitive. And the substantive difference according to neurologists and neurosurgeons is that reflexive activities of this nature are neither conscious nor aware activities. And without cognition, there is no awareness.

The parties cooperated completely with the GAL during the thirty day investigation, analysis and report preparation. The issue of feasibility and value, raised in the court charge, and discussed throughout this report, provided the basis for very serious discussions among the parties regarding an agreement to pursue an alternative process in order to resolve the disputes in this matter and gain closure for Theresa.

Of the Schindlers, there has evolved the unfortunate and inaccurate perception that they will "keep Theresa alive at any and all costs" even if that were to result in her limbs being amputated and additional, complex surgical and medical interventions being performed, and even if Theresa had expressly indicated her intention not to be so maintained. During the course of the GAL's investigation, the Schindlers allow that this is not accurate, and that they never intended to imply a gruesome maintenance of Theresa at all costs.

Of Michael Schiavo, there is the incorrect perception that he has refused to relinquish his guardianship because of financial interests, and more recently, because of allegations that he actually abused Theresa and seeks to hide this. There is no evidence in the record to substantiate any of these perceptions or allegations.

The Schindlers and the Schiavos are normal, decent people who have found themselves within the construct of an exceptional circumstance which none of them, indeed, few reasonable and normal people could have imagined. As a consequence of this circumstance, extensive urban mythology has created toxic clouds, causing the parties and others to behave in ways that may not, in the order of things, serve the best interests of the ward.

Jay Wolfson, DrPH, JD
Professor of Public Health and Medicine
University of South Florida

Jay Wolfson is Professor of Public Health and Medicine, Director of the Florida Health Information Center and Director of the Suncoast Center for Patient Safety at the University of South Florida in Tampa. He also is a Professor of Health Law at Stetson University College of Law, and Professor of Medicine at Florida State University.

He is the Co-Director of the Consortium for Law and Medicine, University of South Florida/ Stetson University College of Law and was designated as a member of the Medicare Competitive Pricing Review Committee through 2004. He serves as Associate Director of the National Patient Safety Center of Inquiry, Veterans Health Administration, VISN.

He has served as a trustee, vice chair and chair of finance of Tampa General Hospital for 12 years. He conducts research and writes about health care law, ethics, policy and finance and the role of employers in health cost management and health status promotion. Dr. Wolfson is actively involved inlocal, state and national policy analysis, legislative advisement and regulatory development and management. He was appointed Special Guardian Ad Litem for Theresa Marie Schiavo, reporting to Governor Bush and the Florida Courts and named Expert on Health Law, Finance and Policy by Florida Attorney General in matters relating to Dialysis Fraud and Abuse in Florida.

He holds a doctorate in public health from the University of Texas, a law degree from Stetson University College of Law, a master’s degree in public health from Indiana University, a master’s degree in history from New York University, and an undergraduate degree in history from the University of Illinois.

He has been named a Faculty Scholar to the U.S. Centers for Disease Control and Prevention, a Senior Fulbright Scholar at the University of Tokyo Medical School, and a W. K. Kellogg Fellow in Health Care Finance.

He directs a nationally recognized, federally funded program that provides care and services for women, children and families infected with or affected by HIV/AIDS, as well as one of 18 nationally designated, federally funded centers for patient safety research.

Dr. Wolfson also has a private health law practice.

AP Interview: Former Schiavo guardian calls for definitive
tests
Vickie Chachere
Associated Press

TAMPA, Fla. - Terri Schiavo should undergo a new examination by independent medical experts to put to rest lingering questions on whether she has any hope of recovery, the University of South Florida professor who had been her court-appointed advocate said Tuesday.
But before any tests are done, her warring husband and parents would have to agree to drop their life-or-death legal fight in favor of whichever side the medical evidence supports, Jay Wolfson told The Associated Press in his first interview on the case since serving as Terri Schiavo's guardian ad litem.
His comments come as the legal options of Terri Schiavo's parents have dwindled to two pending matters in state courts which have ruled against them before.
The U.S. Supreme Court refused Monday to consider a legal challenge to "Terri's Law," the measure pushed by Gov. Jeb Bush in October 2003 to keep Terri Schiavo alive after the courts had cleared the way for her death.
Wolfson served as Schiavo's guardian for two months 2003 under the auspices of "Terri's Law." He tried to broker an agreement between the two sides, but was unsuccessful.
Wolfson said it is not too late to revisit the original question in the long-running legal saga - is the 41-year-old woman disabled, or brain dead?
"There is so much at stake here, not just for Terri, but for the issue," said Wolfson, who is both a physician and a lawyer and serves as director of the Health Policy Information Center at USF.
"If we were serious about addressing this, we would say, 'What are the interests of the parties and how can we use science, medicine and good law to take away from the clouding factors in this case?'" he said.
Attorneys for her husband, Michael Schiavo, did not return calls for comment Tuesday. The suggestion of new independent medical review has been suggested, and rejected, by both sides at different stages in the case.
Barbara Weller, an attorney for parents Bob and Mary Schindler, said the offer of an independent medical panel was made by Michael Schiavo as late as the end of last year, but the Schindlers are hesitant to accept such a suggestion.
"The problem is finding truly neutral doctors," Weller said.
The Schindlers, who have been criticized by opposing attorneys for pursuing repeated appeals for their daughter, would prefer to settle the matter out of court, Weller said.
A hearing is scheduled for Friday on a motion in Florida Circuit Court in nearby Clearwater to set aside the decision granting Michael Schiavo permission to tell doctors to disconnect his wife's feeding tube. The Schindlers are arguing, in part, that Terri Schiavo should have had independent legal representation throughout the process.
Terri Schiavo suffered severe brain damage 15 years ago when her heart stopped beating because of a chemical imbalance.
She left no written directive and Michael Schiavo has said his wife would not have wanted to be kept alive artificially. But her parents dispute that she has no cognitive abilities, and say their daughter may be severely brain damaged but communicates with them and reacts to her environment.
Terri Schiavo breatheson her own, but requires a feeding tube for nutrition and hydration to keep her alive.
In 2002, Circuit Judge George Greer considered testimony from five medical experts who examined Terri Schiavo. Two were picked by Michael Schiavo, two by the Schindlers and one was independently selected by the judge.
That independent doctor reported there was no hope for her recovery.
Wolfson said that after examining her medical records, spending time with Terri Schiavo and consulting with experts nationwide, he, too, believes she is ina persistent vegetative state.
But even in his report to the courts, Wolfson wrote of the difficulties in reaching that conclusion, noting Terri Schiavo's "presence" when he was around her.
"Her eyes are not shut, she's breathing on her own and she makes noises," he said. "You want so much to say, 'Terri, give me a sign!' It's not a cucumber lying in a bed.
"The two sides were close to a deal when Michael Schiavo backed out, Wolfson said, saying he couldn't agree to anything Wolfson proposed because it came under the auspices of "Terri's Law," which Michael Schiavo was challenging as unconstitutional.
It was that law that came to its end Tuesday when the U.S. Supreme Court refused to consider it. The Florida Supreme Court had previously struck down the law as an unconstitutional.
Wolfson is not alone among experts in suggesting new, independent reviews of Terri Schiavo's condition.
Arthur Caplan, a director of the Center for Bioethics at the University of Pennsylvania and one of the nation's leading experts on end-of-life care, said last week he too believes a panel of independent doctors should have been asked to evaluate her.
"I don't know why that never happened," Caplan said. "It's been way too long to not have more, independent medical opinions about her diagnosis.
"Wolfson said the Schiavo case has the potential to drag on for years more as the parents continuously reframe their arguments in new legal filings.
"The process has not benefited anybody, it certainly has not benefited Terri,"Wolfson said.
AP Wire | 01/25/2005 | AP Interview: Former Schiavo guardian calls for definitive tests

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