In February of 1990, Terri Schiavo suffered brain damage after collapsing in her home from a cardiac arrest. 15 years later, her story has become a national spectacle. Media outlets around the country have focused on this disabled woman from Pinellas Park, spawning debates about the right to live.
In late 2003, a series of events thrust USF professor and Director of the Florida Health Information Center Jay Wolfson into the forefront of the Schiavo case. Schiavo’s feeding tube was removed in October of 2003, sparking Gov. Jeb Bush to create “Terri’s Law.” The law, passed by Bush and later found unconstitutional, ordered Schiavo’s feeding tube reinserted. Shortly after, Chief Pinellas-Pasco Circuit Judge David Demers appointed Wolfson, who received his law degree from Stetson Law School in 1993 and also holds degrees in history, community health administration and health services, to be Schiavo’s guardian ad litem. The purpose of a guardian ad litem is to make decisions on behalf of someone who is unable to make them on his or her own.
Wolfson was required to file a report to Gov. Bush detailing his findings regarding the Schiavo case and whether she would benefit from therapy to regain the ability to swallow. Wolfson submitted his report on Dec. 1, 2003. Oracle News Editor Mark Lennox discussed with Wolfson his experiences post-guardian ad litem and his findings in the Schiavo case.
What has your experience with the media been like up to this point?
“For the most part, the media has been very respectful. I’ve made it very clear to our media office that I did not wish to get involved with any confrontation activities. No Jerry Springer-type environments. My goal was to simply share the results of my report and my experience I had conducting the investigation. I was as objective as possible.”
Do you see an eventual end to this case?
“Eventually, either Terri will expire when she is 90 or she could expire next week. But that’s not going to be the end of this case. There are profound constitutional issues that have been raised. I think that there have been a lot of intellectual issues that have been raised about where we’re going and what we’re doing as a country with respect to death and dying. Dan Schorr, a public radio broadcaster, said Terri Schiavo is very likely unconsciously contributing to a badly needed American debate about death and dying and end of life decisions. I agree and I’m hoping that the discussion will continue.
“The constitutional issues that have been raised include the roles of legislative bodies and executive officers and the lives of individual citizens. Those are raised in great part because of some philosophical and religious questions that many advocates have often related to the right to life issue, judicial activism, and all of that relates to the decision in Roe v. Wade, not about abortion but judicial activism and the value of life. There are people who are very firmly grounded on both sides of those issues. I represent the largest segment of humans to ever walk the face of the earth. I’m part of the post-World War II baby boom. I could live to be 103 years old.
“We have some questions in our society about the allocation of scarce resources; we started asking those questions back in the ’70s when dialysis first became available. If there was only one dialysis machine in town, who gets it? The bank president or the town drunk? The Schiavo matter has raised our consciousness about family matters, private matters, death and dying matters, health care matters, and I think her legacy for us is going to be to figure out how to best do this.”
When this began did you think it would garner as much national attention as it has?
“I don’t read newspapers and don’t watch local television. So when it began I had no knowledge of what was going on, I just heard anecdotally. I tried to walk into this as a professor of public health and medicine, bringing the knowledge and skills that I have, specifically physiology, microbiology, anatomy, pharmacology, health policy issues and also my experience as an attorney. I just tried to bring good science and good medicine into the case to determine whether or not the facts had been interpreted reasonably and fairly according to Florida law.
“I thought this was always a very private family issue. I came to realize that it had been divorced from that. The role of the government and media had taken it away from Terri and made it more of an ideological or political or economic question.
“I tried to spend as much time with Terri and her family as much as possible. I tried to establish in a clear and convincing level that she was in the state that she was diagnosed as being in. I tried to be as balanced as possible, not casting any stones, not talking about personal issues but looking at the science and medicine of the law. I didn’t even think about it evolving beyond that. I knew that my report would only be a recommendation that had no force of law. I was discharged from my position within four months of being named. Then the Supreme Court got involved and the governor got involved and the president got involved and it became an extraordinary case.”
What criticisms have you taken about your report?
“That’s a good question, because up until recently I wasn’t aware that people had read my report. Occasionally when I would get some negative e-mails, I would say, ‘Before you cast stones, if you’ve not already done so, please read my report, which is attached,’ and I must tell you that every single instance in which I did that, within 48 hours or so, I received a response that usually said, ‘I’m very sorry for what I said, I hadn’t read your report. Thank you for the enlightenment. I appreciate the objective information.’ Everyone who has read the report seems to think it’s fairly objective. My hope was that the report would stand as objective and scientific.”
How do you feel about government intervention in the case?
“I’ve tried to avoid expressing my feelings about anything except hoping that Terri finds peace. I think this creates important constitutional questions. I feel these issues need to be private issues. I believe there needs to be far more education on living wills. I think everyone should express their intentions in advance how they would want to be treated in a like or similar circumstance. If you want to be kept alive forever, say so. For a country that prides itself and claims that it is the most religious country on earth, we sure fear death.”
Do you think the public has not received a proper view of what the real case is? Do you feel people are basing their decisions without having all the proper information?
“I think that’s probably a fair statement, but it’s not uncommon that the public relies on sound bytes and what it believes or what it is told. It’s difficult to tell a whole story through sound bytes. With sound bytes the detail isn’t there, the attention span isn’t there. There are even instances where people have said, ‘We don’t care even if Terri had a living will, we would seek to have it not enforced because we believe that it is the wrong thing to do.’
“There is a difference between those who hold a strongly held religious, philosophical and ideological perspective that is well-grounded in faith, belief and knowledge and an individual case where the facts and circumstances may not be clearly and completely articulated. I think in this case there has been a lot of misarticulation or lack of articulation about facts.
“I have three sons. It is impossible to imagine what it’s like for a parent to have a child predecease them especially when the child is in this kind of condition. None of us can imagine what it could be like. Even if we had a living will, say you wrote a living will today, it’s how you feel today. But what if something bizarre happened, what if your opinion changed? The law is an instrument and we apply it the best we can, and I extend that to medicine and science. We apply it honestly and with integrity. We will make mistakes sometimes because we are human, but these are such private personal challenging matters and none of us can imagine.
“These are all good people. The Schindlers are good people. Michael (Schiavo) is not a bad guy. This is an American tragedy in so many ways, but it’s coming at a time in our country, politically and philosophically, when we have to prepare to address about the allegations of scarce resources in a society that is living longer with multiple chronic diseases. This is in many ways a public health question because we’re going to have to allocate resources to care for you, and actually you’ll end up paying for me. (laughing) So stay employed and pay a lot of taxes.”
If you can describe it, what have you learned from all this?
“That’s a very broad question. The one thing I’ve taken personally and professionally is that I’m a very lucky guy. I’m at a university that is undergoing a vital and important transformation under what I believe to be truly enlightened leadership that can grasp the opportunity to make the university better. The time is right. Being a professor at a university is a rare and distinguished opportunity to have an influence on the community in which we live, not in an esoteric way by hiding in a room and crunching data, but by bringing information out into the community and providing objective science and knowledge for purposes of affecting public policy and improving the world we live in. That is one of the important things about being at a university.
“For me, the lesson that I’ve learned is that I’m a lucky guy because I’ve had an opportunity to use the opportunities given to me at the university to learn and study and teach my students and to provide modest input on things that are important to me and my children. There aren’t many places where you can do that.”