Dr. Jay Wolfson, professor of Public Health and Medicine at the University of South Florida and professor of Health Law at Stetson University College of Law, was online Wednesday, March 23, at 11 a.m. ET to discuss his role as special guardian for Terri Schivao in 2003 and his report on her condition to Gov. Jeb Bush and the Florida courts.
A transcript follows.
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Dr. Jay Wolfson: Hello -- my name is Jay Wolfson, I am professor of public health and medicine at the University of South Florida, College of Public Health in Tampa, and Professor of Law, Stetson University College of Law. I served as the court appointed, special guardian ad litem for Theresa Marie Schiavo, subsequent to the special law passed by the Florida Legislature in October of 2003. I had one month to review all of the medical and legal documents (more than 30,000 pages) and prepare a report to the Governor and the Courts addressing the question as to whether or not Terri should have additional swallowing tests. In doing this, I spent close to 30 days visiting with Terri each day -- for as long as 4 hours each day, including visits with her parents and her husband.
My final report was presented to the Governor and to the 6th Judicial Florida Circuit Court.
It is stated that Terri is in a persistent vegetative state. Yet I regularly see pictures/video of her focusing on objects and people. Several nurses have also stated that she has the ability to swallow soft foods and has done so. What exactly is a "persistent vegetative state". It seems to me that she is just severely brain damaged.
Also, isn't starvation an incredibly cruel way to make someone die? We wouldn't allow this to happen to a convicted murderer? How can this be justified?
Dr. Jay Wolfson: the pictures you see are several years old, including those depicting terri when michael made certain that she had make up and new clothes every day. she cannot swallow anything but her own saliva, and would aspirate (suck into her lungs) any food or water that might be given to her. there are many unsubstantiated facts. please try to read the report that i wrote and it may provide some additional, factual guidance.
washingtonpost.com: A REPORT TO GOVERNOR JEB BUSH
AND THE 6TH JUDICIAL CIRCUIT IN THE MATTER OF THERESA MARIE SCHIAVO
Dr. Wolfson, thank you for being with us today.
You served as the legal appointed guardian of Terri Schiavo for 30 days in 2003 and issued your report in December of 2004.
How did that come about? What did you observe? What did your report say?
Dr. Jay Wolfson: I was appointed by the judiciary, according to the requirement of the law for a special guardian to investigate Terri's swallowing capacity. This opened the door to issues relating to her neurological capacity. I was required to review and report on the previous 14 years of legal and medical evidence and activities. After spending hours with Terri, getting to know her parents and siblings and her husband, and reviewing all of the evidence, my conclusion was that the competent medical evidence provided in the the case, following the Florida rules of civil procedure and evidence, and according to the Guardianship law in Florida, which was carefully crafted over fifteen years of bipartisan political and religious efforts --- indicated by clear and convincing evidence that she was in a persistent vegetative state, according to the most credible science and medicine. I also concluded that based on the same Florida laws and rules, the trier of fact appropriately determined that Terri had expressed, while she was competent, the intention never to be kept artificially alive under such circumstances. The evidence supporting this included competent legal evidence demonstrating that she personally expressed those intentions at the funerals of two family members who had been on life support -- so it was contextual. Due to the conflict between the parties, I suggested that additional testing could and should be done but ONLY if the parties agreed in advance as to how the results would be used. We almost came to agreement on this option, but for legal reasons, one of the parties pulled out on the last minute.
Why didn't you insist on appropriate and complete neurological tests, including a swallow test, as part of your review?
Are you a neurologist?
Dr. Jay Wolfson: i did.
Any idea how many people are in Terri's condition, at any one time, nationwide?
Dr. Jay Wolfson: not well documented.
The parents of Terri Schiavo expressed hope that Terri can still recover from her condition. Is there any possibility of this?
Dr. Jay Wolfson: The competent medical evidence submitted in the case, interpreted according to the rules of civil procedure and evidence in florida indicated by the clear and convincing standard that she is in a persistent vegitative state with no reasonable medical likelihood of recovery. the extensive literature supports this finding.
I saw you describe the brain matter in Terri. How was that determined?
Dr. Jay Wolfson: MRI scans.
I think Terri's wishes should be followed and am pro-right-to-die. However, removing a feeding tube when she's not on any life support seems rather disturbing. Is there a harm is in allowing her to continuing to be alive, whatever that may mean?
For some reason, to me, removing a feeding tube seems a lot different than removing her from, for example a breathing machine.
Dr. Jay Wolfson: This is part of the crux of the debate -- but in florida and elsewhere, including according to the guidelines published by the American College of Cardinals, feeding tubes are defined as 'artificial life support'.
Dr. Wolfson, I read your extraordinary report for the court on Terri Schiavo's behalf. The Schindler family seems to have grown more resistant over time to accepting the idea of that Terri has no meaningful cognitive brain function as time passes. Is that the case, and if so, what do you think accounts for their determination that Terri is treatable? Thank you. Your discussion of this case has been helpful to many of us.
Dr. Jay Wolfson: I think their position is that of loving parents. I cannot imagine having to come to such a realizing regarding my own sons. The entire mortality issue is so profound -- and hope is an exceptionally powerful thing. Recall the sign on the gates of Dante's Hell -- "abandon hope all ye who enter here" ---
If Terri's parents are successful and they are able to keep
her alive, what does the future hold for her? Who would
become her guardian in the event of their death? What is
her physical prognosis in the future? What would her
husband roll be in her future?
Dr. Jay Wolfson: some of these questions would be determined by a court of law. her prognosis has been fairly well documented.
Over the past few days ,many people on television and on the radio have contended that she could be rehabilitated, but hasn't been given the chance. In your medical opinion, is that true, or is she beyond that point?
Dr. Jay Wolfson: I offer no medical opinion - only a carefully thought through review of the actual medical facts and legal documents, according to the rules of evidence and the rules of civil procedure and the guardianship law of Florida.
Why did you insist on agreement before a swallow test was done? why not ask for a definitive test so that the truth would be known? were you a mediator or a fact finder?
Dr. Jay Wolfson: I had no legal power in any event. And the courts were not obliged to follow any of my recommendations.
Upper Marlboro, Md.:
Can you state which party disagreed?
Dr. Jay Wolfson: Mr. Felow, Michael's attorney, properly disagreed, because he was in the midst of a constitutional challenge to the law that appointed me -- if he had bought into my suggestion, then he would be lending credence to the very law he was challenging -- and that would have diluted his challenge. he was legally correct.
Did you try to give Terri thickened liquids?
Did you interview any of the doctors or nurses who said they gave Terri jello or other foods? They said she ate it and enjoyed it.
Dr. Jay Wolfson: there is no credible evidence to support any of those contentions.
Can you give any insight into the personalities of the Schindlers and Michael Schiavo? Particularly, why haven't they reached some sort of compromise after all these years?
Dr. Jay Wolfson: The Schindlers are wonderful people. they are the kind of people i grew up with. i played in their home, with their children, ate at their dinner tables. they are warm, caring, loving good people. Michael is not warm and fuzzy, but i believe that he is honestly seeking to put in place the intentions of the woman he loved. and as her husband, he was more intimate with her than anybody on earth.
I've read of the case, and wonder whether the courts resent being regarded or portrayed as deciding on matters of life and death, rather than the law? Are the courts the proper place for such things to be decided? Is there a need for a non-governmental, non-judicial body to decide such matters?
Dr. Jay Wolfson: Wonderful question. Some suggest that ethics panels should be created -- but can you than imagine something like the Committee of Public Safety during the French Revolution? Courts adjudicate disputes between parties by attempting to apply the rule of law to facts. That is what has happened here. There is no easy solution to this -- but we like to say that we are a society of laws, not people. that is tough for parents and loved ones.
Ottawa, Ontario, Canada:
Understanding the right to a dignified death, my question pertains to the validity of the 'legal guardian' in this matter. From what I have read/seen, the husband would appear to be in a position of conflict of interest, as he has a girlfriend, and children with her. Obviously, then, there becomes an issue with his motivation to have the feeding tube removed - where, if at all, does this factor into the overall issue?
Dr. Jay Wolfson: He was appointed the legal guardian. that was challenged legally and upheld. But at another level -- and this is somewhat personal, i can love my wife and my mother -- i can retain love and affection for persons with whom i had previous intimate relationships, without abandoning the goodness of intent and caring i have for them. that alone, may not create a conflict of interest.
What is your opinion of the "diagnosis" by our two doctor senators, Bill Frist and Tom Coburn, both of whom say Mrs. Schiavo can make a full recovery?
Dr. Jay Wolfson: I do not believe they have examined Ms. Schiavo. And i do not know how much of the medical records they have carefully examined.
Is there a current legal guardian of Terri Schiavo?
Dr. Jay Wolfson: he husband was and remains her legal guardian. i was a special guardian ad litem -- for limited, special purposes. i had no legal control over anything that happened to her.
Brain scans for functional areas:
New technology allows researchers to follow active areas of the brain with different types of scans - showing what areas 'light up' during problem solving, etc. What if any of these types of scans for brain function have been done on Terri?
Dr. Jay Wolfson: They have not. She did have special electrodes implanted in her brain, in California, shortly after her accident. they were not successful in creating any responsiveness.
Thank you for taking questions on this important subject.
Did Mrs. Schiavo suffer from an eating disorder resulting in the hypokalemia that put her into cardiac arrest?
In my admittedly limited professional experience, patients with eating disorders tend to live in highly enmeshed and problematic families.
Dr. Jay Wolfson: the evidence in the file indicates that Ms. Schiavo may have suffered from an eating disorder. She would drink between 15-20 glasses of iced tea each day and may have been purging additionally. before she was 18, she weighed 250 pounds, and then, with her loving mother, decided to lose weight. she did - and went down to about 150, at which time she met michael. she continued to lose weigh aggressively, and got down to 110 before she had her accident. at the hospital, her electrolyte imbalance was profound, causing the cardiac arrest. that imbalance could have been caused by the extreme amount of fluid intake. now, she weighs about 150.
A lot of people condemn Michael Schiavo for "changing his mind" after he received a settlement of 300K and Terry received 700K. I've read that he used the $$ for the care of Terry. Is this true? Also, who is currently paying for her care? Are all the people (politicians and civilians) who are vocal supporters of keeping her alive also helping with the enormous financial cost? Or are some potentially using Terry Schiavo to foster their own agenda?
Dr. Jay Wolfson: the politicians are doing what they do. michael cared aggressively and positively for terri for many years. perhaps after the judgement, he came to accept what the physicians had been telling the family for years -- that she was not going to recover. it may be coincidental, but perhaps the end of the court case provided a natural basis for closure --- and michael reluctantly decided to move on with his life -- and allow terri to move into the next stage of hers. this is based on the documents i read and the extensive discussions i had with michael and the Schindlers.
New York, N.Y.:
The way this is playing out is very disturbing to those of us that had to make life ending decisions for others. I can understand the emotions of both her husband and her parent. When faced with a similar decision to make, I agonized over having to make the decision but never over the decision itself. I, however, was grateful that my decision was done in a private manner with supportive people around me. After reading your report, I believe there is real harm in keeping her alive as some suggest to play this drama one more time. Harm to Terri and to her family as death brings the ability to start to heal in these situations. Do you agree?
Dr. Jay Wolfson: this is a private matter. it has evolved well beyond that. as daniel Schorr said, terri may be unconsciously contributing to our national debate on death and dying. hopefully this will all be to her benefit.
Dr. Wolfson, is it necessary in most states to go to a lawyer to get an advance medical directive or living will?
Dr. Jay Wolfson: no you should be able to get one on line and have it witnessed and notarized. be sure it addresses your intentions. your local bar or health department will have free information about this on line.
College Park, Md.:
It's a tragic situation, and although I support the stance taken by Terri's husband, my sympathies are with her parents who I feel reluctant to criticize.
As evidenced by some of the other questions asked in this discussion, there seems to be quite a bit of misinformation about the case going around. Do you have any speculation about why?
Dr. Jay Wolfson: misinformation is a characteristic of our information oriented society. and then there is hope and politics.
I am a family physician, and I really appreciate your clear-headed discussion of this issue here and in your recent interview on NPR. It is a welcome break from the nonsense, confusion, and at times, frank disinformation that has characterized much of the debate about this poor woman and her family.
Can you please discuss your impressions on her responsiveness. You spent quite a bit of time with her. Does she respond as the family claims she does?
Dr. Jay Wolfson: in the time i spent with her i was not able to observe or experience a consistent response. i talked to her, cajoled her, played music -- but there was random reflective actions -- no responses. though i sure wished that i could have found otherwise.
From this point in time onward, given all you know, how long can Terry Schiavo be expected to live without a feeding tube?
Dr. Jay Wolfson: up to two weeks is possible.
I went to the Web site that Terri's parent's have on her situation. They say that much of what's said about her condition is false. She can eat on her own, she could get better with therapy. Why is there no common ground when it comes to the medical opinion of Terri's hope for recovery or whether she would benefit from having her feeding tube reinserted?
Dr. Jay Wolfson: if she were given food, she would likely aspirate and either choke or develop an infection that would kill her. she does not eat or drink and she cannot.
The State of Wisconsin's Web site contains free downloadable advance directive forms.
Are you aware of any other states that offer this?
Dr. Jay Wolfson: most states do.
You mention electrolyte imbalance. My wife drinks 20 to
25 glasses of fluids every day, so you have me worried.
Was it a specific electrolyte, like potassium? Or a suite of
Dr. Jay Wolfson: depends, i should think, on her total medical and personal history.
Dr. Jay Wolfson: I sincerely hope that this has provided a modest opportunity to shed some light on this most heart wrenching case. The best we can do is rely on good law, good science and good medicine - and do it honestly. the courts have done their jobs, and the rules of law and science have been applied as well as possible. there is no good or easy answer to this -- only the hope that the result will be in the best interests of Terri Schiavo. but there is no way to overcome the grief and dashed hopes of loving parents. but this is not about the parents, the family, the legislature, the governor, the congress or the president. it is only about terri.