States of Awareness : Defining, debating what constitutes a vegetative state
By Dawn MacKeen and Roni Rabin
October 26, 2003
After the car accident, Tommie Joannou lay in a hospital bed, comatose. His face was swollen, his head swathed with bandages and he breathed with the help of a respirator. Brain scans showed virtually no activity, and doctors told his mother that if he didn't die, the recent high school graduate would remain suspended in a coma or a persistent vegetative state.
But Tommie survived, and eight months after the accident, the Joannous took their son home. When the ambulance brought him to their Bethpage home, he was utterly unresponsive, his eyes staring straight ahead. "Then the dog jumped on top of him, and he started to laugh," his mom, Rosalie Joannou, said. "It was his first reaction in eight and a half months."
Almost six years later, Tommie Joannou still can't talk, but Rosalie Joannou said he laughs at all of her jokes and continues to make progress. "He can't speak and he can't walk," Joannou said. "But he is far from being in a vegetative state. I reject that term."
Many family members particularly dislike the term "permanent vegetative state" applied to their loved ones. Among them are the parents of Terri Schiavo, the 39-year-old Florida woman whose husband wants to let her die by removing her feeding tube. She has been unable to talk for 13 years, following a heart attack and oxygen deprivation that left her with severe brain damage. If no action is taken, she could remain in that state for many years, requiring care estimated to cost $500,000 annually.
Between 16,000 and 35,000 Americans lie in a similar state, according to a 1995 estimate from the American Academy of Neurology. While their grimaces and occasional movements spark relatives' hope, doctors say the likelihood of their recovery after a year has passed is virtually nonexistent. If they don't recover by then -- or make a transition into what's termed the "minimally conscious state" -- they are considered to be in a permanent vegetative state.
Several physicians have testified that Schiavo is in a permanent vegetative state. "Has anyone ever recovered from a permanent vegetative state?" asked Dr. Joseph Fins, chief of the division of medical ethics at New York Weill Cornell Center. "The answer is no."
For doctors, the delineation between the various states of unconsciousness is clearly defined in the guidelines of the American Academy of Neurology.
When the eyes open after a coma but the person remains unconscious, the individual is said to be in a vegetative state -- defined as not having an awareness of oneself, or of the environment, and having no evidence of language comprehension. If there's no progress within a month, the person is considered to be in a "persistent vegetative state." Next is the "permanent vegetative state," which is declared between three months and a year, depending on the nature of the injury.
Many neurologists have recently proposed another category called the "minimally conscious state," which describes a person who has progressed from a vegetative state to have intermittent awareness of the environment and occasional but unreliable use of language. But the progression must occur within the first year after injury, before the person becomes permanently vegetative. Once someone is minimally conscious, he or she may improve further but the likelihood is slim, doctors say.
But even doctors say it's very difficult to distinguish between the two states, vegetative and minimally conscious, because the outward behaviors, such as facial expressions, may be indistinguishable to the layman. "If a person smiles you see it once, you don't know what it means. You have to look for patterns between them and their relationship to the environment," said Dr. John Whyte, director of the Moss Rehabilitation Research Institute in Philadelphia.
Some family advocates say the addition of a category for a minimally conscious state is a vindication of what they have been saying for years: that many of their loved ones are not vegetative and have more potential for recovery and improvement than has been acknowledged by the medical establishment.
Interpreting the movements of the unconscious patient -- the squeeze of the hand, the blink of the eye -- is difficult for both doctors and family members. It is an attempt to distinguish between what may be just a biological reflex -- as unconscious an action as one's heartbeat -- and the injured's subtle attempt to communicate.
First, "it's so murky because we don't have full understanding of brain damage and consciousness," explained Dr. Ross Bullock, Reynolds professor of neurosurgery at Virginia Commonwealth University in Richmond, Va. "And Number 2, every patient is different. And Number 3, every patient's pattern of brain damage is different."
But most cases, including that of Joannou, seem to progress as described by the medical literature.
Of course, there are cases widely reported, like that of Terry Wallis of Arkansas who awakened after more than 18 years, that are outside the confines of the criteria so neatly defined in medical guidelines.
Wallis was paralyzed in a motor vehicle accident in 1984 and then reportedly languished in a vegetative state. Doctors were unable to explain why he emerged after so many years. Dr. Fins speculated that perhaps he was misdiagnosed in the beginning, and had actually been in a minimally conscious state.
Dramatic awakenings are indeed rare. They are not as sudden and miraculous as portrayed by the media, family members and physicians say. And those who awaken must cope with serious brain injuries and lasting disabilities. They may be blind, unable to walk, with personality changes, cognitive impairment and memory loss.
"It's not like on TV, someone wakes up and right away gets back to everyday living," said Fran Diperi, a member of Coma Recovery Association, which runs a support group for family members at South Nassau Communities Hospital.
Diperi's son, Chris, was 18 when a car accident left him in a coma in 1984, she said. When he regained consciousness after three months, he had no memory of the previous two years of his life and was left with a condition called ataxia that affects his balance and coordination. After years of physical, speech and behavioral therapy, he is still disabled, his mother said; he can carry on a conversation, but has few inhibitions and may be abrupt, Diperi said. But, she said, he is married and is able to live on his own, and he and his wife recently bought an apartment.
But Diperi is one of the lucky ones. Felicia Sansotta's son Joe, who is 33, sustained brain injury when his heart stopped following complications from surgery five years ago. He was in a coma for about a week, and while his doctors now consider him in a persistent vegetative state, Sansotta prefers to say he is "minimally aroused." He is on a feeding tube but breathes on his own, and he will turn toward someone's voice and sometimes cry. Recently, his mother said, he started laughing and, occasionally, smiling.
The Sansottas, who care for Joe in their Huntington Station home, would never even consider cutting off his food supply, Felicia Sansotta said, but hold out hope medical advances will yield a treatment for people like him. "It breaks your heart to see him like this," she said.
"I think what's keeping this family going here is, we still believe in miracles."
Copyright (c) 2003, Newsday, Inc.
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