We are, each of us, standing in Theresa Marie Schiavo’s shoes. Each of us is profoundly affected by the decisions that have and will be made in this case."
These are the opening words of a 38 page report given to Gov. Jeb Bush and the 6th Florida Judicial Circuit 1 December 2003 by Jay Wolfson, as Guardian Ad Litem to Theresa Marie Schiavo.
I find his words hauntingly sympathetic to the woman he was assigned to represent, and he seems quite unbiased in rendering his judgment. The following is a distillation of his report down to a reader’s digest version – to address a variety of statements and assumptions that are being made. Parts of the report have been ommitted, but the GAL’s words were not changed in any way. Bolding and italics are mine.
Guardian Ad Litem’s Findings
The Information Acquisition Process
Upon appointment, this Guardian Ad Litem met with the Schindler family and their attorneys, Michael Schiavo and his attorney, and with the Ward, Theresa Marie Schiavo. The establishment of a trusting relationship with all of the parties was a priority in order to ensure that any recommendations would be feasible and valuable. Only thirty days were afforded to the process.
In order to create a common ground among the parties, essential to feasibly and valuably addressing the best interests of Theresa, the parties agree in principle as follows:
1. The GAL is accepted and trusted by all the parties as having clean hands and acting exclusively in the interests of Theresa.
2. The GAL’s judgment regarding the best interests of Theresa and his ability to objectively, fairly, scientifically and caringly represent these interests is accepted by all the parties.
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.
A legal analysis of the tens of thousands of pages of documents in the case file, against the statutory legal guidelines and the supporting case law, leads the GAL to conclude that all of the appropriate and proper elements of the law have been followed and met. The law has done its job well. The courts have carefully and diligently adhered to the prescribed civil processes and evidentiary guidelines, and have painfully and diligently applied the required tests in a reasonable, conscientious and professional manner.
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). If Theresa can swallow, then she can take nutrition and hydration orally, and it is argued that she would not elect to stop eating. But to orally eat and drink, Theresa must possess cognitive capacity beyond mere reflex, or she will not only fail to ingest, but could easily aspirate substances into her lungs and be subjected to infections and subsequent death. Early in Theresa’s care, neurological examinations were performed to assess her cognitive capacity. Competent medical practitioners determined that Theresa was in what has been consistently defined as a persistent vegetative state – a finding that throughout the litigation was not disputed by either side. Quite recently, the Schindlers have disputed that Theresa is in a persistent vegetative state, and in the alternative, they have argued that even if she is, she deserves to live and be maintained via artificial nutrition and hydration.
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.
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.
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. 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. (Descartes addressed this in his proposition that it is our awareness, our consciousness that defines our being: "Cogito, ergo sum".)
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.
This evidence is compromised by the circumstances and the enmity between the parties. Until recently, while both Michael Schiavo and the Schindlers agreed that Theresa was in a persistent vegetative state, they could not agree as to the matter of discontinuation of life support. Recently, the Shindlers have adopted what appears to be a position that Theresa is not in a persistent vegetative state, and/or that they do not support the fact that such a medical state exists at all. Yet throughout the nearly ten years of litigation, it is the issue of her ability to swallow, ingest food and hydration, and the findings regarding any residual cognitive ability that have marked the medical substance of this dispute. 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. Until and unless there is objective, fresh, mutually agreed upon closure regarding measurable and well accepted scientific bases for deducing Theresa’s clinical state, Theresa will not be done justice. There must be at least a degree of trust with respect to a process that the factions competing for Theresa’s best interest can agree. To benefit Theresa, and in the overall interests of justice, good science, and public policy, there needs to be a fresh, clean-hands start. 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.
The GAL concludes the Guardian Ad Litem appointment be extended until a resolution is concluded in the matter of Theresa Maria Schiavo.
The rules were adhered to and they are the laws of this state. Again, Justice Renquist in Cruzan: “But the Constitution does not require general rules to work faultlessly; no general rule can.” Cruzan v. Director, MDH, 497, U.S. 261 (1990)
We remain in Theresa Schiavo’s shoes.
(below is the time line given in the GAL's report - it seems the most factual statement of events that I have seen.)
Historical Facts in Theresa Marie Schiavo’s Case
Theresa Marie Schiavo was born in the Philadelphia, Pennsylvania area on 3 December 1963 to Robert and Mary Schindler. She has two, younger siblings, Robert Jr., and Susan. Through the age of 18, Theresa was, according to her parents, very overweight, until she chose to lose weight with the guidance of a physician. She dropped from 250 pounds to around 150 pounds, at which time she met Michael Schiavo. They dated for many months and married in November of 1984. The Schiavo and Schindler families were close and friendly.
Theresa and Michael moved to Florida in 1986 and were followed shortly thereafter by Theresa’s parents and siblings. Theresa worked for the Prudential Life Insurance Company and Michael was a restaurant manager.
About three years later, without the apparent knowledge of her parents, Theresa and Michael sought assistance in becoming pregnant through an obstetrician who specialized in fertility services. For over a year, Theresa and Michael received fertility services and counseling in order to enhance their strongly held desire to have a child. By this time, Theresa’s weight had dropped even further, to 110 pounds. She was very proud of her fabulous figure and her stunning appearance, wearing bikini bathing suits for the first time and taking great pride in her improved good looks. Testimony and photographs bare witness to these facts.
On the tragic early morning of 25 February 1990, Theresa collapsed in the hallway of her apartment, waking Michael, who called Theresa’s family and 911. The lives of Theresa, Michael and the Schindlers were to change forever.
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.
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,
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 case.
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.
After the malpractice case judgment, evidence of disaffection between the Schindlers and Michael Schiavo openly emerged for the first time. The Schindlers petitioned the court to remove Michael as Guardian. They made allegations that he was not caring for Theresa, and that his behavior was disruptive to Theresa’s treatment and condition.
Proceedings concluded that there was no basis for the removal of Michael as Guardian Further, it was determined that he had been very aggressive and attentive in his care of Theresa. His demanding concern for her well being and meticulous care by the nursing home earned him the characterization by the administrator as "a nursing home administrator’s nightmare". It is notable that through more than thirteen years after Theresa’s collapse, she has never had a bedsore.
As part of the first challenge to Michael’s Guardianship, the court appointed John H. Pecarek as Guardian Ad Litem to determine if there had been any abuse by Michael Schiavo. His report, issued 1 March 1994, found no inappropriate actions and indicated that Michael had been very attentive to Theresa.
During the final days of this investigation, an agreement, designed and titled a "platform of understanding" for an agreement in principle, was sculpted. Elements of the platform were acceptable to all, and there was preliminary and contingent agreement in principle to the intent and much of the content of the drafts. All three parties, the Schindlers, Michael Schiavo, and the Office of the Governor, through their respective attorneys, participated actively in this process. The agreement was based, in good part, on the trusting relationship that evolved between the GAL and the parties during the investigation. It was expected that the parties would make a joint request to the court to allow and facilitate the agreement to be carried out.
The evening before the deadline for the submission of this report, the negotiations surrounding the agreement broke down, and the parties were not able to achieve what would have been an agreement in principle to engage in a new and different process.
It is foolish to be afraid of death. Just think - no more repaired tires on the body vehicle, no more patchwork living.