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 Ã¢€œa nursing home administratorÃ¢€™s nightmareÃ¢€. It is notable that through more than thirteen years after TheresaÃ¢€™s collapse, she has never had a bedsore.
By 1994, MichaelÃ¢€™s attitude and perspective about TheresaÃ¢€™s 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.”