Guardian hasn't forgotten time with Schiavo, and never will

TAMPA, Fla. - (KRT) - Two dark scenarios haunt Jay Wolfson even now, a year and a half after his brief appointment to be a neutral arbiter, a guardian, an unbiased observer, the one man asked by the state of Florida to stand in Terri Schiavo's shoes.

One is that the severely brain-damaged woman is in a terrible lightless place, aware of nothing but a yawning, endless hopelessness.

The other is that even though he never elicited a response from her, despite all the pleading and cajoling he did at her bedside, that he might have missed some subtle, nearly invisible signs that she was somewhere in there, aware.

"Imagine not having hope and being aware that's all you had was no hope. The horror. It's like not being, but knowing that you're not," said Wolfson recently in his Tampa-area office. "That's one thing. The other is, what if she's knocking on a door somewhere and I was walking through all the wrong corridors and I missed it. What if?"

Wolfson was appointed by a Florida court in the fall of 2003 to be Schiavo's guardian ad litem, or guardian at law, to deduce Schiavo's best interests and represent neither her husband nor her parents but Terri Schiavo herself.

This makes Wolfson one of the very few people to have spent extended time with Schiavo and gauged her level of awareness without having a vested interest at stake.

In the end, after long hours at Schiavo's bedside and after poring over 30,000 pages of legal documents, Wolfson concluded that Schiavo was indeed in a permanent vegetative state.

"You want to weigh in on life as opposed to death," Wolfson said. "You want some way to elicit a response."

Wolfson was appointed Schiavo's guardian after the Florida Legislature passed "Terri's Law" in 2003, a move that allowed doctors to reinsert her feeding tube, despite a judge's ruling that it should be removed. The law has since been struck down as unconstitutional.

Wolfson, who has a law degree and a PhD and is a distinguished service professor of public health and medicine at the University of South Florida, was asked to decide whether Schiavo's feeding tube should be removed and whether more tests should be done to assess her ability to swallow.

He scoured 13 years' worth of legal documents and extensively interviewed Schiavo's husband, Michael, and her parents, Bob and Mary Schindler. His time with Schiavo was spent trying to determine whether she was aware of and interactive with the world.

At first, walking into Schiavo's room, he was struck by her presence, even though he knew in advance that she drifted between wakefulness and sleep.

"She's a person, like you or I, and the first disconcerting part is that she's awake," said Wolfson.

When awake, Schiavo's eyes rolled about the room. She made random noises that sounded like groaning or the start of a laugh or cry.

But court documents said Schiavo's cerebral cortex, where reason and emotions are housed, had degenerated to fluid. So Wolfson set about trying to determine whether Schiavo's noises and jerks were merely reflexive or if they indicated something more.

He played Elton John CDs for her, and Bach and Mozart and music from the late 1980s, when she was in her 20s, prior to her collapse. He held her hands, squeezing them, and stroked her hair and face.

He put his face close to hers and tried to make eye contact, pleading desperately, trying to will her into giving him any kind of sign.

"I would beg her, `Please, Terri, help me,'" he said. "You want to believe there's some connection. You hope she's going to sit up and bed and say, `Hey, I'm really here, but don't tell anybody.' Or, `I'm really here, tell everybody!'"

But Schiavo never made eye contact. When Wolfson visited her when her parents were there, she never made eye contact with them either, he said. And for all of Wolfson's pleadings and coaxing, he never got what he most wanted: a sign.

"I felt like there was something distinctive about whoever Terri is," said Wolfson. "But I was not clear that it was there, inside the vessel."

Wolfson was dismayed to learn Friday that Barbara Weller, an attorney for the Schindlers, claimed that Schiavo tried to speak. "Terri does not speak," he said. "To claim otherwise reduces her to a fiction."

One thing Wolfson never doubted was that for all their intense, mutual antagonism, both Michael Schiavo and Terri's parents love and adore her.

She was cared for incredibly well, Wolfson said. Her hair was always combed, and after 15 years of being incapacitated, she never developed a bedsore. In fact, Wolfson said until about seven years ago, Michael Schiavo had Terry's makeup and hair done regularly, and her clothes changed every day - to the point that hospice staff protested that he was being overly demanding about her care.

Also, Wolfson concluded, Schiavo would never have tolerated the enormous, "omnipresent" acrimony between her husband and parents.

In the 38-page report he wrote afterwards, Wolfson said the best decision for Schiavo could be made only if both sides agreed to fresh, independent medical testing. If the new testing showed she couldn't swallow on her own and that Schiavo had no hope for improvement, then the feeding tube should be pulled.

Both parties were on the verge of agreeing to these new conditions, Wolfson said, but once the Florida Supreme Court struck down Terri's Law his efforts were moot.

Wolfson still refuses to give his personal opinion on whether Terri's feeding tube should or should not have been pulled.

But he will say, as a parent of three sons, that after doing everything one can, sometimes the time comes to let go.

"When it evolves beyond that person into issues that are other people's issues or are broader issues, it becomes less objectifiable," said Wolfson. "It's hard to be objective anyway. This is the kind of thing you don't wish on anybody."

The doctor who put the electrodes in instructed Michael to have the electrodes removed when she needed to have an MRI.

Brain surgery. No one even requested such a thing. And again, this was all out of Michael's hands, anyway. The 5 doctors, tests, and exams were court-ordered to accommodate the requests of all 5 doctors (including the 2 her parents chose).

And, all neurologists agree that no single test is conclusive of PVS. It is a diagnosis made by observing the patient clinically, the patient's history, the cause of the injury, and various scans.

The totality is what they use. Karen Ann Quinlan's brain was fine, except for damage to her thalamus (or hypothalamus - I forget.) Yet, no one would dispute that she was PVS.

Keep in mind, I'm not saying I know whether she is PVS or not. I'm only answering specific aspects of who said and did what and why. lol

When they say that part of her brain has turned to liquid they are saying something that's impossible to know without an MRI.

Here is Terri's ct brain scan from 2002:

Here is a normal ct brain scan:

(I couldn't find a bigger one - in a rush here - sorry)

The testimony at that trial focused in large part on how much tissue was left. What they all agreed to, was that there was extremely little.

The only thing they could not tell was whether what little was left was comprised of living neurons, or just gliotic tissue that holds them together, and whether any living neurons left could benefit by vasodilation or hyperbaric oxygen. That was the dispute.

And, according to Hammesfahr himself, her EEG showed "no activity". Dr Bambakadis used less dramatic words calling it severely abnormal and consistent with PVS, even when they applied painful stimulation to her.

(again - I wish they'd bring in a dozen doctors selected by some neutral standard and settle this question.)

Some of the blood work suggests bulimia. Yet some does not.

What blood work does not suggest an eating d/o?

Throughout your post, you used your very lack of personal experience as an EMT and non-information as though it were evidence itself...

The timing of the collapse, causes a bit of doubt to the bulimic scenerio. Mikie says that he heard a "thump" at 6 am.

More like 5:30, which, to me, is in his favor. Had he wanted her dead, all he had to do was go back to bed a few hours and "find her" when he got up. Easy to sleep through such things.

Usually a call will come for a patient who has expired in the night, and have been found in the morning.

Exactly. ; )

Most bulimics/anorexics in this condition have already been in treatment for their disease, and have already had a history of medical problems before a collapse of this type.

As the jury agreed.

She was being treated for infertility, irregular periods, and fatigue.

Like my friend's husband said, after reviewing her charts and talking to doctors on the "inside" down there, her signs (including chems) were obvious even before her collapse.

There is no evidence of a cardiac arrest on Terri's serial Ekgs or in her blood work.

I guess all the doctors who saw her and my cardiologist friend are part of the conspiracy.

Even Dr Baden, the famed forensic pathologist y'all were quoting like crazy before, has joined the conspiracy after viewing her other records.

Look. Like I said, I have serious problems with what he's done too. But, this whole attack theory is unfortunate, IMO. Especially when most of it depends on inventing some info and ignoring other info.

Shoe-horning to fit a desired conspiracy theory throws everything else said into doubt. Like the claim that Terri tried to scream "I want to live" yesterday.

I'll leave it at that, though. I've been here before and all I get for it is fatigue. lol

Have you seen this?

AFFIDAVIT

STATE OF FLORIDA

COUNTY OF PINELLAS

BEFORE ME the undersigned authority personally appeared CARLA SAUER IYER, R.N., who being first duly sworn, deposes and says:

1. My name is Carla Sauer Iyer. I am over the age of eighteen and make this statement of my own personal knowledge.

2. I am a registered nurse in the State of Florida, having been licensed continuously in Florida from 1997 to the present. Prior to that I was a Licensed Practical Nurse for about four years.

3. I was employed at Palm Garden of Largo Convalescent Center in Largo, Florida from April of 1995 to July 1996, while Terri Schiavo was a patient there.

4. It was clear to me at Palm Gardens that all decisions regarding Terri Schiavo were made by Michael Schiavo, with no allowance made for any discussion, debate or normal professional judgment. My initial training there consisted solely of the instruction "Do what Michael Schiavo tells you or you will be terminated." This struck me as extremely odd.

5. I was very disturbed by the decision making protocol, as no allowance whatsoever was made for professional responsibility. The atmosphere throughout the facility was dominated by Mr. Schiavo’s intimidation. Everyone there, with the exception of several people who seemed to be close to Michael, was intimidated by him. Michael Schiavo always had an overbearing attitude, yelling numerous times such things as "This is my order and you’re going to follow it." He is very large and uses menacing body language, such as standing too close to you, getting right in your face and practically shouting.

6. To the best of my recollection, rehabilitation had been ordered for Terri, but I never saw any being done or had any reason at all to believe that there was ever any rehab of Terri done at Palm Gardens while I was there. I became concerned because nothing was being done for Terri at all, no antibiotics, no tests, no range of motion therapy, no stimulation, no nothing. Michael said again and again that Terri should NOT get any rehab, that there should be no range of motion whatsoever, or anything else. I and a CNA named Roxy would give Terri range of motion anyway. One time I put a wash cloth in Terri’s hand to keep her fingers from curling together, and Michael saw it and made me take it out, saying that was therapy.

7. Terri’s medical condition was systematically distorted and misrepresented. When I worked with her, she was alert and oriented. Terri spoke on a regular basis while in my presence, saying such things as "mommy," and "help me." "Help me" was, in fact, one of her most frequent utterances. I heard her say it hundreds of times. Terri would try to say the word "pain" when she was in discomfort, but it came out more like "pay." She didn’t say the "n" sound very well. During her menses she would indicate her discomfort by saying "pay" and moving her arms toward her lower abdominal area. Other ways that she would indicate that she was in pain included pursing her lips, grimacing, thrashing in bed, curling her toes or moving her legs around. She would let you know when she had a bowel movement by flipping up the covers and pulling on her diaper.

8. When I came into her room and said "Hi, Terri", she would always recognize my voice and her name, and would turn her head all the way toward me, saying "Haaaiiiii" sort of, as she did. I recognized this as a "hi", which is very close to what it sounded like, the whole sound being only a second or two long. When I told her humorous stories about my life or something I read in the paper, Terri would chuckle, sometimes more a giggle or laugh. She would move her whole body, upper and lower. Her legs would sometimes be off the bed, and need to be repositioned. I made numerous entries into the nursing notes in her chart, stating verbatim what she said and her various behaviors, but by my next on-duty shift, the notes would be deleted from her chart. Every time I made a positive entry about any responsiveness of Terri’s, someone would remove it after my shift ended. Michael always demanded to see her chart as soon as he arrived, and would take it in her room with him. I documented Terri’s rehab potential well, writing whole pages about Terri’s responsiveness, but they would always be deleted by the next time I saw her chart. The reason I wrote so much was that everybody else seemed to be afraid to make positive entries for fear of their jobs, but I felt very strongly that a nurses job was to accurately record everything we see and hear that bears on a patients condition and their family. I upheld the Nurses Practice Act, and if it cost me my job, I was willing to accept that.

9. Throughout my time at Palm Gardens, Michael Schiavo was focused on Terri’s death. Michael would say "When is she going to die?," "Has she died yet?" and "When is that bitch gonna die?" These statements were common knowledge at Palm Gardens, as he would make them casually in passing, without regard even for who he was talking to, as long as it was a staff member. Other statements which I recall him making include "Can’t you do anything to accelerate her death - won’t she ever die?" When she wouldn't’t die, Michael would be furious. Michael was also adamant that the family should not be given information. He made numerous statements such as "Make sure the parents aren’t contacted." I recorded Michael’s statements word for word in Terri’s chart, but these entries were also deleted after the end of my shift. Standing orders were that the family wasn’t to be contacted, in fact, there was a large sign in the front of her chart that said under no circumstances was her family to be called, call Michael immediately, but I would call them, anyway, because I thought they should know about their daughter.

10. Any time Terri would be sick, like with a UTI or fluid buildup in her lungs, colds, pneumonia, Michael would be visibly excited, thrilled even, hoping that she would die. He would call me, as I was the nurse supervisor on the floor, and ask for every little detail about her temperature, blood pressure, etc., and would call back frequently asking if she was dead yet. He would blurt out "I’m going to be rich!," and would talk about all the things he would buy when Terri died, which included a new car, a new boat, and going to Europe, among other things.

11. When Michael visited Terri, he always came alone and always had the door closed and locked while he was with Terri. He would typically be there about twenty minutes or so. When he left Terri would would be trembling, crying hysterically, and would be very pale and have cold sweats. It looked to me like Terri was having a hypoglycemic reaction, so I’d check her blood sugar. The glucometer reading would be so low it was below the range where it would register an actual number reading. I would put dextrose in Terri’s mouth to counteract it. This happened about five times on my shift as I recall. Normally Terri’s blood sugar levels were very stable due to the uniformity of her diet through tube feeding. It is my belief that Michael injected Terri with Regular insulin, which is very fast acting.

12. The longer I was employed at Palm Gardens the more concerned I became about patient care, both relating to Terri Schiavo, for the reasons I’ve said, and other patients, too. There was an LPN named Carolyn Adams, known as "Andy" Adams who was a particular concern. An unusual number of patients seemed to die on her shift, but she was completely unconcerned, making statements such as "They are old - let them die." I couldn’t believe her attitude or the fact that it didn’t seem to attract any attention. She made many comments about Terri being a waste of money, that she should die. She said it was costing Michael a lot of money to keep her alive, and that he complained about it constantly (I heard him complain about it all the time, too.) Both Michael and Adams said that she would be worth more to him if she were dead. I ultimately called the police relative to this situation, and was terminated the next day. Other reasons were cited, but I was convinced it was because of my "rocking the boat."

13. Ms. Adams was one of the people who did not seem to be intimidated by Michael. In fact, they seemed to be very close, and Adams would do whatever Michael told her. Michael sometimes called Adams at night and spoke at length. I was not able to hear the content of these phone calls, but I knew it was him talking to her because she would tell me afterward and relay orders from him.

14. While at Palm Gardens, I became fearful for my personal safety. This was due to Michael’s constant intimidation, including his menacing body language, vocal tone and mannerisms.

15. I have contacted the Schindler family because I just couldn’t stand by and let Terri die without the truth being known.

FURTHER AFFIANT SAYETH NAUGHT.

CARLA SAUER IYER, R.N.

The foregoing instrument was acknowledged before me this _____ day of September, 2003, by CARLA SAUER IYER, R.N., who produced her Florida driver’s license as identification, and who did / did not take an oath. Notary Public My commission expires:

SomeCallMeTim wrote:
"However, what I just don't understand is... If her parents want to continue care, what's it to him? Let them. Let go and move on with your life. But, he appears hell-bent to see this through. THAT, I simply don't understand."

There are apparently two answers.

Initially, it was for the money: As Guardian Ad Litem Pearse noted, Michael's attitude toward her care changed dramatically when he stood to inherit a fortune upon her death. After the big malpractice award was paid, he suddenly "remembered" that she had said she wouldn't want to live like that, and he began trying to get her killed.

But he claims that he has now spent most of that fortune on legal expenses. He's offered no proof of that, but lets assume he is telling the truth about it. If so, then he apparently no longer has a financial motive. Why, then, not let her parents care for her?

Well, it seems that in the process of fighting the Schindlers over whether to kill Terri, he has developed a deep hatred of them. So, now he has another reason for trying to kill Terri: he's doing it out of spite. He wants to kill her because he wants to hurt her family, who he hates.

That's very nearly what Michael Schiavo, himself, said, in a moment of candor, when deposed in 1999:

September 27, 1999 Deposition of Michael Schiavo, Page 48-49
Q. Have you considered turning the guardianship over to Mr. and Mrs. Schindler?
SCHIAVO: No, I have not.
Q. And why?
SCHIAVO: I think that's pretty self explanatory.
Q. I'd like to hear your answer.
SCHIAVO: Basically I don't want to do it.
Q. And why don't you want to do it?
SCHIAVO: Because they put me through pretty much hell the last few years.
Q. And can you describe what you mean by hell?
SCHIAVO: The litigations they put me through.
Q. Any other specifics besides the litigation?
SCHIAVO: Just their attitude towards me because of the litigations. There is no other reason. I'm Terri's husband and I will remain guardian.

Line 21
Mr. Felos: There may be a question or two of clarification. Can I have just a minute to talk with my client?
...
Page 51, Cross Examination by Attorney Felos
Q. You were also asked a question about resigning as guardian or would you consider that. Upon reflection, is there anything that you want to add in response to that question?
SCHIAVO: Yeah. Another reason would be that her parents wouldn't carry out her wishes.

There are apparently two answers.

That's very nearly what Michael Schiavo, himself, said, in a moment of candor, when deposed in 1999:

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