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.

There is no clear evidence other than some people's statements (which we all know may or may not be true).

In the "real world," people are taken off life support all the time. Most of the time, the doctor consults with close family members to determine the patient's wishes where there's no living will. If the Schindlers hadn't taken Michael to court, Terri would have been gone years ago, in accordance with her desire not to live hooked up to machines.

The thing that puts the ring of truth into the Schiavo statements is that Michael's sister-in-law also testified that Terri said she wouldn't want to live that way. I can see maybe a scheming husband and a conniving brother conspiring to get all of Terri's money, but not another woman. Also, the judge seems to be a good judge (so to speak) of human character, and he didn't see anything wrong with the three Schiavo family member testimonies. The people who see something wrong also see black helicopters everywhere and an extra gunman on the grassy knoll.

First, I am adamantly not a black helicopter person. Period. I usually roll my eyes at conspiracy folk. Believe that or not.
Now, was the sister in law the wife of the brother who also testified that Terri said that? If so, I'm sorry, I discount it equally with the brother (both may be true, but equally both could be false).
Last, I have followed this story for about 5 years, so I didn't just jump in and say, oh, bad husband must want his wife dead.
Oops, I can't count, THIS is last...
It may be Florida law, but I don't consider pulling a feeding tube and allowing someone to starve/dehydrate to death the same as taking them off life support any more than I would say stopping spoon feeding of an alzheimer's patient is taking them off life support. And, now that I live in FL, I intend to see what can be done to change the law.

susie

I'm sorry. I just don't find Michael, his brother and his sister-in-law's statements to be credible, because I simply think Michael had reason to lie. And many brothers and their wives would also lie for a family member. His lies might have fit the legal test more exactly, but were they true? When judging the credibility of a witness, you don't just look at the witnesses' statements. You have to look at the witness himself, especially his propensity or his motivation to lie. That's one reason why issues of facts (vs law) are not "rejudged" on appeal. The witnesses aren't present, so you can't tell how they appear when speaking.

Regardless, of who said what to who...it is nothing but heresay and shouldn't have been admissable in court to begin with. Gee, what great world we live in now, that we have to watch our commentary on tv shows from 10 years ago, b/c people will testify from hearsay and you're liikely to be starved to death. nevermind the fact that even if you may have said something contradictory to what you originally said 5 years afer the event...but that doesn't count...right?

Regardless, of who said what to who...it is nothing but heresay and shouldn't have been admissable in court to begin with.

Without a living will, all they had was hearsay. Terri couldn't talk and hadn't written anything down. How else was the judge supposed to know her wishes? It seems to me, by reading the Wikipedia pages, that this affair must have been tried in the civil law system where hearsay is acceptable. I've heard other people talking about hearsay, saying it shouldn't have been used, but it seems obvious to me that it was reasonable to use it. I wish one or more of our lawyer friends in this thread would clear up the matter. Any takers?

What really gets to me about this whole case is that I would have done exactly the same things as Michael Schiavo did. After the accident, I would make sure my wife got the best care and therapy that money could buy. I would stay with her as much as I could, and do anything I could do to make her life better. And when the time finally came that I knew deep in my heart that there was nothing more I could do, and no way she would ever get better no matter what, I would do her the last kindness I could do, and honor her stated wishes. Since we have living wills, that won't be a problem, but in case they get lost in a house fire or something, enough family members are familiar with her wishes that there won't be a problem. But if a problem came up, and I had to go to court, I would be just as aggressive in carrying out her final wishes as Michael was. I would probably also shut down the therapy sessions too, since they would serve no purpose. I probably wouldn't shack up with another woman while she was still alive, because I would consider that immoral, but I can't fault him for it. I'm sure he got lonely after a few years. And I would never say "When will the b!tch die" or whatever he was supposed to have said (although I consider that more of a rumor than an actual fact).

So why do some people dislike Michael Schiavo?

I have stayed out of this, but the insanity of these threads is starting to get to me. It is like a Bizarro DU, with ideas like the Secret Service grabbing Terri or a wall of people standing there to stop whatever it is they want to stop.

Bottom line: THE SSCHINDLERS HAVE NO STANDING! Once Terri got married, by EVERY POSSIBLE LAW, the husband was allowed to act on her behalf. Removing feeding tubes from persons in a persistent vegetative state happens all the time.

I know that if I expressed my desire that I be allowed to pass rather than be a vegetable (don't jump in here with your opinions about whether she is or isn't -- many doctors and over 20 judges have adjudicated she is) to my wife and then my family and then CONGRESS, for Goodness sake, put their nose in where it didn't belong, I would be pissed in advance if I knew they were going to do it.

This is all about the husband being a scumbag. No matter how many threads are posted, this is a personal matter. Unless the endgame is to never allow feeding tubes to be removed under any circumstance in the presence of autonomic breathing, this should never have been

Without a living will, all they had was hearsay. Terri couldn't talk and hadn't written anything down. How else was the judge supposed to know her wishes?

There was nothing but conflicting heresay from various parties so is that a good reason to up and off her?. Just b/c Tweri might have said one thing one day in her life doesn't mean she didn't say something else completely different in her life later on. The decision to kill Teri is irreversible and what is the harm if she is allowed to live? In the end there will always be the mystery, but not some irreversible circumstance. Secondly, you may think Teri doesn't want to live, b/c of the condition she is in. Is this b/c you don't want to be in this condition either, so you are putting you're current mindset into terris? In fact, if godforbid you are in teri's situation you may very well still have that will to live that you have right now. How do you know Teri does not still have that will to live? If you ask me what if she only has a will to die, then my answer to you is...she would have given up a long time ago then. Many people think they know what they want to do with their lives when it comes to crucial life and death decisions and when faced with them , they usually choose life.

You're living in a fantasy world that didn't exist! First of all, all of Terri's friends say the scumbag abused and controlled her, so much so that she told them she was getting a divorce. Scumbag must have been told that and flipped out, coming within minutes of completely choking the life out of her. The only reason he got her all of that great care initially is for the lawsuit! THE MINUTE THE MONEY WAS AWARDED, ALL CARE CEASED!!! DO YOU UNDERSTAND THAT?!

freedumb2003 - You make a lot of sense.

paltz - Yes, there were two conflicting testimonies about Terri's wishes. But the testimonies weren't equal. There was a single statement from Terri when she was a juvenile that may not have indicated her end-of-life wishes. There were several statements from and adult Terri to three different people that definitely indicated her end-of-life wishes with no ambiguity. You can read them all in my previous link and decide for yourself. I would hope you'd take the time to read what she actually said and make up your mind that way, rather than count all statements as equal.

What is the harm if she is allowed to live? I've heard many people saying this and I don't understand how someone could ask the question. Terri definitely stated that she wouldn't want to live while hooked up to a machine, being a burden. Now she is in exactly that situation. It is Michael's last duty to Terri to make sure her last wish is enforced, and from what I've seen, he's carrying out that duty with the same dogged determination that I would maintain if it fell to me. Why in the world would he ever want to turn Terri over to some alternate caregiver, like her parents, knowing in his heart that (if she could) she would rebel and fight against continuing one more day as a vegetable hooked up to a machine? That was the thing that she said she never wanted to do, and it's the one situation that Michael should never let her continue in. She would want to be removed from the tubes and wires as soon as possible, not continue in life as some kind of bizarre half-alive zombified corpse. Yet that is exactly the horrible fate to which some people want to condemn her.

To Terri, when she was alive, that was quite literally a fate worse than death.

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