Links on Schiavo and Persistent Vegetative State

Below are links to some excellent resources for helping understand the medical and legal issues involved in the Terri Schiavo case. Most if not all of this has been seen before but judging from the level of the debate surrounding the case, people are still operating from serious misunderstanding of the facts.

Florida appelate lawyer Matt Conigliaro has an excellent timeline of the events in Terri Schiavo’s case, links to the transcripts of every court decision during the process, and a lengthy discussion of the frequently asked questions.

Steven Taylor has extensive excerpts from the report filed by Jay Wolfson, DrPH, JD, who was appointed Guardian Ad Litem for Terri Schiavo by Governor Jeb Bush in 2003. What’s especially instructive is his findings as to the actions of Michael Schiavo:

Proceedings concluded that there was no basis for the removal of Michael as Guardian Further, it was determined that he had been very aggressive and attentive in his care of Theresa. His demanding concern for her well being and meticulous care by the nursing home earned him the characterization by the administrator as “a nursing home administrator’s nightmareâ€. It is notable that through more than thirteen years after Theresa’s collapse, she has never had a bedsore.

By 1994, Michael̢۪s attitude and perspective about Theresa̢۪s condition changed. During the previous four years, he had insistently held to the premise that Theresa could recover and the evidence is incontrovertible that he gave his heart and soul to her treatment and care. This was in the face of consistent medical reports indicating that there was little or no likelihood for her improvement.

The idea that Michael Schiavo is a horrible human being who has done everything possible to ensure that his wife was denied treatment is a vicious slander perpetrated by Terri’s parents and their ideologically motivated supporters. It has zero basis in fact.

Several recent articles also explain the wrenching medical issues involved.

ANATOMY OF HOPE: For Parents, the Unthinkability of Letting Go (NYT, March 20).

Accepting that a loved one is brain-damaged beyond recovery, that he or she is in a “persistent vegetative state,” incapable of thought or emotion, is all but impossible for many people, for reasons that go deeper than the fear of loss. A lifetime of intimate familiarity with a person, unresolved feelings of guilt, psychological projection of personal needs – all of these conspire to reject a hopeless diagnosis, no matter how medically certain it may be, psychologists say. Religious convictions can also play an important role. And the nature of the vegetative state itself can be cruelly misleading.


Ms. Schiavo’s parents have been fighting for some 15 years to continue life-support measures for her, and they object to doctors’ conclusions that their daughter is in a persistent vegetative state. Experts say that is not an unusual reaction in such cases, at least initially. “The vegetative state can be described as a state of wakeful unresponsiveness, and it’s a very hard concept to get your arms around,” said Dr. Joseph Fins, chief of the medical ethics division of NewYork-Presbyterian Hospital/Weill Cornell hospital. “When the eyes are open, we associate that naturally with sentient awareness, when it is not. And this paradox feeds into the denial that a catastrophic medical event has taken place.” Especially when a patient’s eyes open on emergence from a coma, Dr. Fins said, family members are likely to assume that this is evidence of recovery. In fact, he said, it can augur poorly for the patient. When the eyes open but there is no quick return to mental responsiveness, it suggests that the primitive brain stem is reasserting itself, without engaging the higher brain: the cortex and other parts that are involved in thought and emotion. “It’s far better to wake up and completely wake up,” he said. “The eyes simply opening looks like a good thing, but may be bad.”

In some rare cases, patients may indeed reach or pass through a state of minimal consciousness, where they are intermittently able to respond or move with purpose, say by reaching for a glass. Recent magnetic imaging studies have shown significant mental activity in such patients. But doctors have determined that this is not the case with Terry Schiavo.

How Awake? The Science Behind Grading Consciousness (ABC, March 21)

The American Academy of Neurology has a set of guidelines when it comes to determining the conscious state of a patient. The disputed case of Florida patient Terri Schiavo has thrown these medical gradations into public light — where, researchers argue, the complexity of the diagnosis is sometimes lost. “The key point is this is a clinical judgment,” said Joseph Fins, chief of the medical ethics division of New York Presbyterian Hospital, “and medical diagnosis is not an ideological activity.”

Doctors have determined that Schiavo is in a persistently vegetative state. Bernat explains this is when “you have wakefulness, your eyes are open, but you are unaware. It can appear as if you are aware, but it’s a state of unconsciousness.” How can a patient be awake but unaware? Bernat says extensive damage to key parts of the brain — namely, the cerebral cortex, the thalamus and/or connections between them — can strip a person of his or her sense of awareness, while an undamaged brain stem keeps automatic activities, such as breathing, sleep and wake cycles and eye movement, going. “The cerebral cortex and thalamus are the most important regions of the brain in terms of personality and consciousness,” said Bernat. “They’re what differentiate us from lower animals in terms of our ability to have language and communicate.”

In the mid-1990s, a group of medical societies, including the American Academy of Neurology, published guidelines defining a vegetative state as “persistent” after a month. In this condition, patients show:

-No evidence of awareness of self or environment and an inability to interact with others.

-No evidence of sustained, reproducible, purposeful or voluntary behavioral responses to visual, auditory, tactile or noxious stimuli.

-No evidence of language comprehension or expression.

-Intermittent wakefulness manifested by the presence of sleep-wake cycles.

-Sufficiently preserved brainstem function to permit survival (i.e. ,breathing) with medical and nursing care.

-Bowel and bladder incontinence.

-Variably preserved cranial nerve function and spinal reflexes; that is, the person may blink or smile.

The AAN considers those who have been in this condition for a year or longer to have “almost no probability of recovery.”

Medical, Ethical Questions Largely Decided, Experts Say (WaPo, March 22)

The brain-damaged woman will never regain the conscious awareness she lost 15 years ago, medical experts said, and decades of case law have already dealt with the legal issues raised by people in her condition. Patients who do not return to normal within weeks of losing conscious awareness have a very poor prognosis, studies have shown. Electrical measurements have revealed no activity in the regions of Schiavo’s brain needed for such consciousness, and repeated clinical examinations have left no doubt about her future. “She is permanently unconscious and will never again have consciousness,” said Robert M. Veatch, a professor of medical ethics at the Kennedy Institute of Ethics at Georgetown University, adding that she cannot feel sensations of hunger or thirst. “She can’t starve or be thirsty. Anyone who uses those words doesn’t understand the condition she is in.”
Schiavo’s parents, however, have argued that their daughter’s condition is not as bad as doctors suggest. Schiavo sleeps and wakes, blinks, and sometimes seems to smile. Her parents and other critics of the decision to remove her feeding tube insist that she responds to the presence of friends and relatives.

Medical experts said those behaviors are the cruelest aspect of a terrible condition: Grimaces and other facial expressions give families of tens of thousands of such patients hope, but they are evidence only that Schiavo’s brain stem is working, keeping alive reflexes and routine bodily functions. They do not suggest that the higher areas of brain functioning needed for her to regain conscious awareness will return, experts said. “It’s uncanny but misleading,” said William Winslade, who has studied how to distinguish patients in a persistent vegetative state from those suffering from other conditions at the University of Texas Medical Branch in Galveston. “Family members . . . will interpret random eye movements as something is happening. That has to be the case with Terri Schiavo. A truckload of physicians have concluded she is in a persistent vegetative state.”

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James Joyner
About James Joyner
James Joyner is Professor and Department Head of Security Studies at Marine Corps University's Command and Staff College. He's a former Army officer and Desert Storm veteran. Views expressed here are his own. Follow James on Twitter @DrJJoyner.


  1. TnTexas says:

    Have you read either of these articles? They appear to contain information that if true contradicts common “knowledge” about Terri’s situation.

    Killing Terri Schiavo

    Starving for a Fair Diagnosis

  2. carla says:

    This is my first visit to this blog. I don’t know if you tend to lean right or left or both. But I’d like to commend you for your commentary on the Schiavo case.

    There is so much misinformation floating out there…much of it from rightwing sources. Your effort to really look at the facts is great. Thanks.

    I have written several pieces for my blog on the Schiavo situation. It is one that rattles me to the core.

    I’m concerned that even living wills, done in writing will now be compromised by Congress’ actions. Given that two courts (including the Second Court of Appeals) yielded definitive rulings on Terri’s wishes, Congress stepped in creating a horrible precedent.

    Again, thanks for your commentary.

  3. charlotte callejo says:

    Good information. The Shiavo case has moved to the “we can’t talk about this” list at my house. My spouse is against the courts ruling and I am for the ruling.
    Lets face it, All the 28 year olds out there who have a living will, Please raise your hand. Oh I see, only a handful. I believe M Schiavo when he says she “told” me she never wanted to live the way she is living now. As her husband he had the right to make the decision to remove her tube ions ago. Funny, the Shindlers thought he was “OK” enough to let hime move into their home for a year after her accident, yet now M. Shiavo is villified.
    Had M. Schiavo said at any point ” You can keep her” to the Shindlers, M. Shiavo would have been villified.
    What is interesting to me, is how the media brings up how M. Schiavo ” may have been abusive to Terry” and that’s how she had the heart attack, when the truth is she had an eating disorder.
    Lets see, the right to lifer’s have their flag draped around Terry, the rabid conservative republicans have their flag wrapped around her. Where is the eating disorder coalition?
    In my opinion this tradgey is a very private affair with no winners. The state goverment, the
    federal goverment and the different causes political and others have NO BUISNESS in this matter.
    The Shindlers lost their “baby girl” 15 years ago and have refused to let go and grieve. What a tradgey.

  4. J Bowen says:

    I would take Wolfson’s conclusions with a grain of salt. What he would know of Terri’s care would have to have come from logs, and we have testimony showing that Michael Schiavo
    manipulated their contents. The same witness’s account portrays him as “a nursing home administrator’s nightmare” in a distinctly different sense. Patterico posted about that a few days ago.

    And I want to see this woman get an autopsy. Incidentally, my information is that Michael Schiavo doesn’t want one – he wants her cremated right away.

  5. Laurie Stauffer says:

    This is the most outradgeous thing I have ever Seen. In animal cases like this, one would be arrested. It is unjust and tourture of a human being. Michael Shiavo gets to sit in his home and enjoy lavishing dinners, deserts and drinks. While he denies his wife that same luxery. This is not a man who can have a heart to love, if he was, he would at least let them give her water and foods by mouth. Then if she dies having been given these things. Maybe Terri can die with dignity and greatfulness to him. There is no honor and dignity in forcing her to die in a way of basically execution. I bring a big question???? WILL MICHAEL SHIAVO DO THIS AGAIN IF HE GETS THE CHANCE… YES he will.

  6. Pete Adams says:

    Laurie Stauffer, you’re an idiot. You need to research what you’re talking about before you go running your mouth. She would never have that same “luxery” (learn how to spell). He doesn’t sit at home having lavish dinners. This isn’t tourture (again with the spelling). She has medications to remove any pain. She most likely will not recover. She has been in this state for 15 years. According the the American Academy of Neurology, the chance for a good recovery from a PVS after 12 months is 7 percent. The chances of any recovery of consciousness after 12 months is 52 percent, and she still has a 50 percent chance of severe disability. So do some research before you go off on a drunken rant about him doing this again. As if this would ever happen twice to the same person.

  7. Lisa Lazenby says:

    I have had it up to my eyeballs with the Terri Schiavo case. Religion and politics do not play into this case. Terri, as I would, do not want to be in this type of condition. She expressed it to her husband; and unfortunately her parents are wasting tax payers dollars to go against her wishes.

    Even if the feeding tube were re-inserted, she is still, and will always be, a vegetable. If I could not function in some way, I would not want to be left alive.

    One thing I hate the most is the image of a female body and what occurs during the period of time when the body has no fluids or food.

    I know from personal expereience, the loss of my fataher, according to Hospice, that a natural lack of water and food provides an anethesticing effect. Meaning that the patient is in no pain, what so ever. It is a natural peaceful death. That is what we wish from all of our loved ones.

    My father died very peacefuly from cancer.

    It makes me soooo mad when people try to capitalizez on information, without communicating the true facts. Shame on them!

  8. Crystal says:

    I’ve read about this case for several years, and recently watched the videos they have online.

    While *I* would not wish to live like that, the most startling of the videos to me is the “swab test”.

    There are certain reflexes that are referred to as “infantile” — that when the higher brain is not functioning (or in the case of infants, has not learned how to function completely yet) become more obvious.

    One of the most well-documented infantile reflex is the “rooting” reflex — that if a person’s cheek is rubbed on one side close to the mouth, they will turn toward the rubbing. It’s one reason some new mothers have difficulties feeding their babies — instead of rubbing the breast or the bottle’s nipple on the cheek, they try to force the head over — by putting pressure on exactly the wrong side of the mouth, and the baby turns toward the pressure, not towards the breast.

    It’s apparent that not only does Terri respond to pressure on the lips or the cheek, she does not exhibit a “rooting” reflex. Instead, she is actively trying to *avoid* the pressure — presumably because when a person hasn’t eaten by mouth in a long time or is mouth-breathing, their lips and mucous membranes in their mouth become incredibly sensitive — and yes, painful, if they can feel pain.

    As for 28 year olds with a living will — I made out my first living will when I was 21. I’m 25 now. I was not motivated by this case to do so, either. While I personally would not want to live that way, I can’t make that same decision for another.

    The one thing that really bugs me about this case is that I’ve heard Michael Schaivo’s religious beliefs used as a defense for his behavior — not divorcing her. I have a feeling it is more due to money, and not because of the whole medical trust issue either. At least in Arkansas, if divorce is based upon a spouse being declared mentally incompetent or being instituionalized (the only grounds Michael would have), the divorcing spouse is responsible for all medical care for the incapacitated spouse *for the rest of their lives*.

    If he divorces her, he won’t be her guardian, and she could live several more years if her parents continue to advocate artificial nutrition. If Florida has a similar law to Arkansas regarding fiscal responsibility for the incapacitated ex-spouse, he’d be out a lot more money than if he “gave the trust fund to charity”.

  9. Doc Ducker says:

    Ladies and Gentlemen:

    There’s nothing left to fight over. All the evidence and opinions have been weighed. Our judicial system has made the decision. Now we must go on. Due process has had it’s “due”.