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March 09, 2005

Red herrings 17 "medical experts" threw at me

Ampersand has a great post about the 17 affidavits filed on behalf of Terri Schiavo by "medical experts."

As Amp notes, none of the experts addresses the implications of Terri's cerebral cortex having been destroyed and replaced by fluid. Nor does anyone attempt to defuse the observation that Terri's movements can be explained by non-conscious processes but not by higher brain activity because she doesn't actually have those higher brain centers anymore.

Moreover, most of the "experts" are quite upfront about having viewed only heavily-edited videos, whereas the trial judge and the doctors who saw the uncut footage saw no evidence of consciousness. Several of the affidavit filers state explicitly that their opinions are based on video clips from Terri's parents' website! (See Amp's post for a more extensive discussion of the scans and the video.)

Not a single one of the so-called experts has even examined Terri. Generally speaking it is considered unethical for a physician to diagnose a patient without examining her. Only a handful of the "experts" even claimed to have reviewed her medical records. Most filed from outside the state of Florida.

Two of the experts identified by the Schiavo Foundation website as "Dr." hold no doctoral degree of any kind (speech and language pathologists Hyikn and and Lakas), and a third claims to have a doctorate in "neuroscience" but admits under oath that his PhD is in clinical psychology (Dr. Hooper).

Dr. Ralph Ankenman is a psychiatrist who wants to treat Terri with Namenda (memantine) a drug indicated only for Alzheimer's disease. Ankenman hypothesizes that Schiavo's speech is "blocked" because she is in a dissociative state akin to that of some patients with severe postraumatic stress disorder. He admits that neither his blocking theory nor his as yet untested proposal to treat massive cortical brain damage with Namenda is what you'd call a "standard concept." As he puts it, "Unfortunately there is as yet no published literature validating these assertions." His recommendations are especially unorthodox, given that Terri Schiavo is neither catatonic nor comatose.

Dr. Beatrice Engstrand believes Terri is conscious based on "a television show that [she] watched" and her experience caring for the Central Park Jogger in 1989. It is difficult to see how Dr. Engstrand's experiences with the Central Park Jogger afford any insight in to Schiavo's case. The CPJ was never in a persistent vegetative state, in fact the patient was only comatose for 12 days.

Dr. Richard Neubaeur wants to treat Terri with hyperbaric therapy, herbs, and acupuncture. It should also be noted that Dr. Neubaeur is also the owner of the largest neurological hyperbaric clinic in Florida and that his affidavit reads like an infomercial.

Dr. Carolyn Heron's affidavit contains at least two elementary errors about the neuropathology of PVS. She argues that the fact that Terri's swallowing reflex is partially preserved indicates that she is not in a PVS. In fact, the reflexive component of swallowing is often preserved to various degrees in patients with PVS (cf. Cole G, Cowie VA. Clin Neuropathol. 1987;6:104-9.) Dr. Heron also claims that the fact that Terri doesn't choke on her own saliva is evidence that she is not in a PVS, again, saliva-handling is a brainstem reflex that is preserved in PVS.*

Dr. Lawrence Huntoon's assessment is based on video clips from "Terri Schiavo's web site." (sic)

Perhaps the most bizarre contribution comes from Dr. Richard Weidman, the head physician at the US Department of Engraving and Printing.

He has not examined Terri Schiavo, instead he bases his opinions on his experiences with his mother, who had Alzheimer's disease. He states:

"I am willing to compare test results done on my mother's brain to those done on Ms. Schiavo's brain and then testify as to the behavior displayed by my mother and how that would be important to Ms. Schiavo."

The Terri Schiavo Foundation promises more affidavits soon.


* Some of the "experts" claim that Terri could be taught to swallow again. If this were feasible, it might be a relevant consideration because the issue is that Terri didn't want to be kept alive artificially. In fact, it is completely unrealistic to think that Terri could survive without a feeding tube.

To put it bluntly, Terri has to be fed by tube is because she is unconscious--it's just not safe to feed unconscious people by mouth, no matter how robust their swallowing reflexes may be. Think drunks and vomit--people who have passed out can easily choke to death even though they retain a much higher level of consciousness than Terri. Ronald Reagan's doctors believe that, like many Alzheimer's patients, the former President died of pneumonia caused by aspirating food while conscious but demented.

No one who cares about Terri's welfare or dignity would ever endorse this doomed swallowing experiment. Death by aspiration pneumonia would be much uglier and more protracted than death by dehydration.

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Comments

I'm amazed that this case hasn't garnered more widespread attention: Drama, lies, emotion, ethics...

No, wait, Martha Stewart! OMFG!

Nevermind.

I'm surprised they've only found 17 so far. Give me a million dollars and I'll find a million personally-accredited (by me) doctors who will testify that global warming isn't real.

Or that Coke is a veritable treasure of vitamins.

Or that Evolution is a big lie.

Or that Drug X is safe.

Or that Bill Clinton once totally ate a baby.

We're flexible.

Whaddup with all the people lying about their degrees?

The speech and language pathologists didn't lie about their credentials their affidavits, the Terri Schiavo foundation website just misrepresented their credentials (or perhaps they made an honest mistake, I don't know). Hopper is a poser, though. His 42-page resume is a real hoot.

So let me get this straight, in order to respect her right to life, these so-called doctors want to experiment on her?

Why is it so important for this woman to die? It almost seems personal. I don't disagree that the arguments the family is spouting are mostly bullshit. At the same time, if it were my wife, I suppose I would do the wrong thing and cling to any false hope, no matter how absurd, just like her parents. My wife and I have talked about this issue and neither of us wants any kind of "heroic effort" to extend the life of the body. But that's easy to say as we sit at the dining room table. If it ever came right down to it, I suppose I would cling even to hopes that bordered on the delusional.

But, whether I did or I didn't, why should that be any business of ANYONE not related to me or my wife? Why is it so important to you that this woman dies?

But, whether I did or I didn't, why should that be any business of ANYONE not related to me or my wife?

Exactly. This is between Michael and Terri Schiavo. If her parents wanted to take the tube out and Michael wanted to leave it it in, the same principle would apply.

Mike G. is right.

This is solely between the husband and the parents.

Although:

This case could have implications for many other people (e.g., as precedent, or if the legislature passes some kind of law in response to it, etc.).

But if it's just b/w the husband and the parents, why should the husband have sole right to decide? I realize this is what the law says, and that's why the courts have ruled as they have. But that law seems kinda poopy.

It's hard to see why a spouse should have ABSOLUTE say in these kind of decisions; especially considering how many marriages don't last.

I think her parents should let her just die already; even if they were right, and she was somehow minimally conscious, that would almost make it worse: what a shitty existence.

It is not at all healthy for them to keep her alive like this. If you've seen the video of her, it's also pretty creepy. Like when she makes noise. It's kind of, like, soul-shaking to listen to it.

But dadahead that the spouse has the final say (not necessarily the absolute) is based in our law and in the Bible.

Is it not the whole point, from a Christian p.o.v., that marriage is the end of dependence on your parents and your rise to adulthood, primary responsibility as a husband or wife and of course a parent.

The Right-to-Lifers involved here are some seriously disturbed people IMHO. The parents and the ongoing conflict between them and Michael is one thing. There should have been a end to this tragedy long ago. The RTL (including the politicians) have sunk to some level of sick, morbid enablers of strife. They have drawn out this families suffering beyond the rational to make a religious and political point.

They should be ashamed of themselves but they is no reasoning with fanaticism. So the hulk of Terri will remain in its current state until...

Lindsay, I hadn't been paying much attention to this until reading your very interesting posts on the topic. Then this morning, I read our local paper and there was an ad taken out by a local pharmacy, no less, all about how to help Terri Schiavo's parents. The ad pictured an adorable beagle and the text was all about how this poor dog had been struck by a car and was lying alone in the corner in agony, with no one caring about it. Would you want that to happen to Terri? So contact whoever at whatever and find out what you can do to help Terri's parents help her.

Very bizarre ad.

As I write this comment, I am doing my charting on computer while I sit at the bedside of a child (19 years old, 20 kg) with cerebral palsy. Actually, the clinical term we still use for her variety is MRCP, or *mentally retarded* CP. She is nonverbal though she is able to smile and make cooing noises; she is nonambulatory and her limbs are contracted into V's that look like twigs, her wrists forming permanent right angles to her forearm. She is being fed through a gastrojejunostomy tube and she also has total perenteral (IV) nutrition and lipids to help her gain weight and these are running through her PICC line, an IV that goes right into her superior vena cava.
I can lift her if I need to. I've never met a nineteen year old that I could lift before.
She likes her little beanie walrus that sits next to her head; I can estimate that she likes it because she smiles and grunts. Her grunts mean different things at different times.
She has no father and her mother cleans the houses of rich people. She has a very small homemade wheelchair that made us all want to cry when we first saw it, so pathetic it was.
One colleague who saw her said, in the back, in confidence to the others: Have you seen Million Dollar Baby?
It's all around me here. She is one of the more well-off in terms of being able to communicate.
I had another patient recently who had been allocated as a 'do not resuscitate' in the PICU until he started to 'wake up'. He came to our unit for rehab and left the hospital walking and talking (and masturbating! Let's hear it for 18 year old boys!). His evil mother went up to the social worker who had been advocating for his DNR status the other day and asked him if he was still glad that he had "wanted her son dead".
am repeatedly astounded by the integrity of my colleagues...I have yet to meet an RN, an MD, or a SW who buys the Right to Life argument in any of these scenarios. Quality of life is different from right to life, right?
Am I the only one who finds a great amount of dramatic irony in the fact that eating is the focus of Terri Chiavos' "right to life" when it was an eating disorder that put her in this state to begin with? I extract no meaning from it, but it's interesting.

Why is it so important for this woman to die?

Because, as the florida courts have repeatedly found, that was her wish if ever reduced to this state. It would be nice if those compelled to express views on this question would remember that it's her wishes, not the husband's or the parents' or the state's, that controls under the applicable law (a law the radical right would love to abolish because, after all, we don't want people having control over their own lives and bodies, do we?)

Nurse Lebo, I agree about the irony of the eating disorder. It seems especially poignant because so many eating disorders are motivated by a desire exert control over the body.

Just FYI, I want to make clear that obviously many of the details that I outlined above have been altered and/or completely fictionalized due to HIPAA laws and general professional confidentiality standards. So, just so you know.
I'm not a writer, but I play one in real life.

The videos posted online are only about 4 minutes of over 4 hours of video (Judge Greer says 4 1/2 hours)

If anything, you can say that Terri's parents chose to deliberately misrepresent the message of the video by the edits they chose:

http://www.sptimes.com/2003/11/10/Tampabay/Schiavo_tapes__snippe.shtml

In one of his recent orders, Greer specifically discounts the new affidavits because, as you pointed out, most of them rely only on those video fragments for their dubious medical opinion.

"OK, I got a question. More of a hypothetical situation... Suppose Terri Schiavo somehow miraculously wakes up from her coma perfectly fine"

I'll take the hypothetical. If Terri Sciavo were to miraculously regain cognitive abilities (and all the rest of the higher brain function she lost after her extensive hypoxic brain injury), she could easily sue (and win) a lawsuit for battery and probably enjoin everyone who assisted her parents in keeping up the "right to life suit" Her husband isher legally authorized representative, not her parents and if he was following her wishes, those wishes were summarily ignored, forcing her to be battered in an effort to keep her alive in those circumstances against her wishes.

I wish people would learn that sometimes letting people go is kinder than forcing them to continue as is. Her parents won't let go because they (understandably) don't want their daughter to be dead and are desperate to see any sign that Terri is still Terri. The activists that support them (and brother Jeb) are using a horrible tragedy as a tool to force their own agenda; they don't care (or don't care to understand) that this is a lesson in futility that prevents the Schindlers from mourning their loss and starting the long healing process of moving on in order to actually live what is left of their lives.

I haven't really followed this case, (which is embarrassing since I actually am a brain scientist) so it was news to me that her cerebral cortex is so damaged. If that's true, then it is a tragic ignorance that feeds the hope that she could ever regain anything like normal function, or even a workable diminished function.

I won't touch consciousness, which is a thorny subject, but with no cerebral cortex, there is nothing she could do cognitively or behaviorally that could distinguish her as human compared to any other vertebrate. Her eyes following a balloon? Fish can do reflexive ocular following. Smiling at her mother? Completely decerebrate mammals can make emotionally-derived facial gestures. If her CAT scans are for real, I cannot imagine the value of preserving her life; she is already experiencing a waking death and short of growing her a new cerebral cortex (which is not yet possible) there is no coming back.

And if, somehow, her cerebral cortex does grow back from its present state to something normal, would the person still be Terri Schiavo?

Here's an account from someone who has spent quite a bit of time with Terri Schiavo:

------------------------------------------
Last Visit Narrative

by Attorney Barbara Weller

When Terri Schiavo’s feeding tube was removed at 1:45 p.m. on March 18, 2005, I was one of the most surprised people on the planet. I had been visiting Terri throughout the morning with her family and her priest. As part of the legal team working throughout the previous days and nights to save Terri from a horrific fate, I was very hopeful. Although the state judicial system had obviously failed Terri by not protecting her life, I knew other forces were still at work. I fully expected the federal courts would step in to reverse this injustice, just as they might for a prisoner unjustly set for execution—although by much more humane means than Terri would be executed. Barring that, I was certain that sometime around noon, the Florida Department of Children and Family Services would come to the Woodside Hospice facility in Pinellas Park and take Terri into protective custody. Or that federal marshals would arrive from Washington D.C, where the Congress was working furiously to try to save Terri, and would stand guard at her door to prevent any medical personnel from entering her room to remove the tube that was providing her nutrition and hydration.

Finally, I was sure if nothing else was working, that at 12:59,just before the hour scheduled for Terri’s gruesome execution to begin, Florida Gov. Jeb Bush would at least issue a 60-day reprieve for the legislative bodies to complete the work they were attempting to do to save Terri’s life and to make sure that no other vulnerable adults could be sentenced to starve to death in America. I had done the legal research weeks before and was fully convinced that Gov. Bush had the power, under our co-equal branches of government, to issue a reprieve in the face of a judicial death sentence intended to lead to the starvation and dehydration of an innocent woman when scores of doctors and neurologists were saying she could be helped.

All morning long, as I was in the room with Terri and her family, we were telling her that help was on the way. Terri was in good spirits that morning. The mood in her room was jovial, particularly around noontime, as we knew Congressional attorneys were on the scene and many were working hard to save Terri’s life. For most of that time, I was visiting and talking with Terri along with Terri’s sister Suzanne Vitadamo, Suzanne’s husband, and Terri’s aunt, who was visiting from New York to help provide support for the family. A female Pinellas Park police office was stationed at the door outside Terri’s room.

Terri was sitting up in her lounge chair, dressed and looking alert and well. Her feeding tube had been plugged in around 11 a.m. and we all felt good that she was still being fed. Suzanne and I were talking, joking, and laughing with Terri, telling her she was going to go to Washington D.C. to testify before Congress, which meant that finally Terri’s husband Michael would be required to fix her wheelchair. After that Suzanne could take Terri to the mall shopping and could wheel her outdoors every day to feel the wind and sunshine on her face, something she has not been able to do for more than five years.

At one point, I noticed Terri’s window blinds were pulled down. I went to the window to raise them so Terri could look at the beautiful garden outside her window and see the sun after several days of rain. As sunlight came into the room, Terri’s eyes widened and she was obviously very pleased. At another point, Suzanne and I told Terri she needed to suck in all the food she could because she might not be getting anything for a few days. During that time, Mary Schindler, Terri’s mother, joined us for a bit, and we noticed there were bubbles in Terri’s feeding tube. We joked that we didn’t want her to begin burping, and called the nurses to fix the feeding tube, which they did. Terri’s mother did not come back into the room. This was a very difficult day for Bob and Mary Schindler. I suspect they were less hopeful all along than I was, having lived through Terri’s last two feeding tube removals.

Suzanne and I continued to talk and joke with Terri for probably an hour or more. At one point Suzanne called Terri the bionic woman and I heard Terri laugh out loud heartily for the first time since I have been visiting with her. She laughed so hard that for the first time I noticed the dimples in her cheeks.

The most dramatic event of this visit happened at one point when I was sitting on Terri’s bed next to Suzanne. Terri was sitting in her lounge chair and her aunt was standing at the foot of the chair. I stood up and learned over Terri. I took her arms in both of my hands. I said to her, “Terri if you could only say ‘I want to live’ this whole thing could be over today.” I begged her to try very hard to say, “I want to live.” To my enormous shock and surprise, Terri’s eyes opened wide, she looked me square in the face, and with a look of great concentration, she said, “Ahhhhhhh.” Then, seeming to summon up all the strength she had, she virtually screamed, “Waaaaaaaa.” She yelled so loudly that Michael Vitadamo, Suzanne’s husband, and the female police officer who were then standing together outside Terri’s door, clearly heard her. At that point, Terri had a look of anguish on her face that I had never seen before and she seemed to be struggling hard, but was unable to complete the sentence. She became very frustrated and began to cry. I was horrified that I was obviously causing Terri so much anguish. Suzanne and I began to stroke Terri’s face and hair to comfort her. I told Terri I was very sorry. It had not been my intention to upset her so much. Suzanne and I assured Terri that her efforts were much appreciated and that she did not need to try to say anything more. I promised Terri I would tell the world that she had tried to say, ”I want to live.”

Suzanne and I continued to visit and talk with Terri, along with other family members who came and went in the room, until about 2:00 p.m. when we were all told to leave after Judge Greer denied yet another motion for stay and ordered the removal of the feeding tube to proceed. As we left the room, the female police officer outside the door was valiantly attempting to keep from crying.

Just as Terri’s husband Michael has told the world he must keep an alleged promise to kill Terri, a promise remembered a million dollars and nearly a decade after the fact; I must keep my promise to Terri immediately. Time is running out for her. I went out to the banks of cameras outside the hospice facility and told the story immediately. Now I must also tell the story in writing for the world to hear. It may be the last effective thing I can do to try to keep Terri alive so she can get the testing, therapy, and rehabilitative help she so desperately needs before it is too late.

About four in the afternoon, several hours after the feeding tube was removed, I returned to Terri’s room. By that time she was alone except for a male police officer now standing inside the door. When I entered the room and began to speak to her, Terri started to cry and tried to speak to me immediately. It was one of the most helpless feelings I have ever had. Terri was looking very melancholy at that point and I had the sense she was very upset that we had told her things were going to get better, but instead, they were obviously getting worse. I had previously had the same feeling when my own daughter was a baby who was hospitalized and was crying and looking to me to rescue her from her hospital crib, something I could not do. While I was in the room with Terri for the next half hour or so, several other friends came to visit and I did a few press interviews sitting right next to Terri. I again raised her window shade, which had again been pulled down, so Terri could at least see the garden and the sunshine from her lounge chair. I also turned the radio on in her room before I left so that when she was alone, she would at least have some music for comfort.

Just before I left the room, I leaned over Terri and spoke right into her ear. I told her I was very sorry I had not been able to stop the feeding tube from being taken out and I was very sorry I had to leave her alone. But I reminded her that Jesus would stay right by her side even when no one else was there with her. When I mentioned Jesus’ Name, Terri again laughed out loud. She became very agitated and began loudly trying to speak to me again. As Terri continued to laugh and try to speak, I quietly prayed in her ear, kissed her, placed her in Jesus’ care, and left the room.

Terri is alone now. As I write this last visit narrative, it is five in the morning of March 19. Terri has been without food and water for nearly 17 hours. I’m sure she is beginning at least become thirsty, if not hungry. And I am left to wonder how many other people care.

------------------------------------------


Does that sound like a woman with no cerebral cortex?
No wonder so many neurologists have ridiculed the suggestion that Terri Schiavo's cerebral cortex has been replaced by fluid.

Numerous neurologists have also expressed horror at the shoddy medical practices that were employed to arrive at her diagnosis of "PVS."
See: http://www.nationalreview.com/script/printpage.asp?ref=/comment/johansen200503160848.asp

-Dave

Even GAL Wolfson, who was predisposed to side with Michael Schiavo (before he was appointed GAL had told the press that he thought Terri's feeding tube should be removed), nevertheless recommended in his report that additional tests be done to determine Terri's true condition. But Michael Schiavo & Felos didn't want to permit that, and Judge Greer (as usual) agreed with them.

Before that, GAL Pearse flatly rejected removing her feeding tube. But Greer (as always) sided with Michael Schiavo & Felos, anyhow.

Greer's misbehavior was so outrageous that the U.S. House and Senate both voted overwhelmingly for a special bill to protect Terri from his order to have her killed. Nearly all the Republicans supported it, as did a great many Democrats, such as Tom Harkin and Harry Reid. A majority of the U.S. House returned to D.C. from their Easter Break, as did President Bush, all to save Terri from a death that would land you in jail if you did it to a dog or a horse.

-Dave

Dave,

Barbara Weller's statement sounds like the statement of a lawyer who is a true believer and who is being richly paid by a Philanthropy fund run by multi-millionaires such as Scaife and Coors. These rich idealogues are the source of the legal fees, now in the hundreds of thousands, if not millions, of dollars, that have funded this right-wing intrusion on the Schiavo family.

It is absolutely clear that nothing like what Ms. Weller described showed up on the full 4 1/2 hour video taken of Ms. Schiavo and in evidence. Indeed, nothing like it appears in the edited 4 minute version, to judge from the affidavits in the parents' behalf. Why should we believe Ms. Weller over the affidavits of Ms. Schiavo's own parents' experts?

There are facts in this world that wishing will not make go away. Like any other person in a persistent vegetative state, Ms. Schiavo makes random and occasional responses to stimuli such as sound, touch and light. That does not mean she is conscious; she cannot be, since she has no cerebral cortex.

David

Barbara Weller - it's obvious the only reason she made any kind of movement when the blinds were opened was as a reaction to the bright light.

If Terri was trying to tell you anything - it is that she wished she had died 15 years ago and not be stuck in this hell. For you to put words in her mouth is just ridiculous.

I hope someday you are in a vegetative state like her and I come to your room and you make a "laughing noise". I'll tell them that you were saying you want to die as well.

You people are all SICK SICK SICK.

There's more interesting perspective on GAL Wolfson's views of the case at PoliBlogger. At Across the Great Divide I dig into the credentials of the latest physician trotted forth to predict a potential recovery for Terri. No surprise that the trails of Focus on the Family, Moody Broadcasting and conservative Christian bioethics center lead to the "Mayo Clinic neurologist."

Hi

Very good stuff. They have been around a long time. - http://www.allsteroidsworld.com
Sorry if there is already post for this, i did not see it.

See you

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