Some aspects of the Terri Schiavo case are familiar to those who provide care for severely brain-injured patients.
They know the open eyes and vacant stare, the apparent absence of awareness.
They've watched as patients, families and physicians make bedside decisions to withdraw life-prolonging support.
They've even helped when families could not agree on what to do.
What they haven't seen before is the way these issues are playing out on such a public stage. And they wonder what this might mean for the future.
"Disagreements among families are not rare, although this degree of polarization, where people just can't be brought to a decision, is rare," said Dr. Rebecca Bigoney.
Bigoney is director of ethics services at Mary Washington Hospital. She and other caregivers in the area see patients like Schiavo several times a year.
These patients are said to be in a persistent vegetative state. Many, like Schiavo, have suffered cardiac arrest that leads to a loss of oxygen to the brain. As a result, they may lose some or all brain function.
Schiavo was 27 when she suffered cardiac arrest. Her brain did not get the oxygen it needed and important portions of it were damaged.
Bigoney said she saw copies of Schiavo's MRIs at a conference in Florida in October. The "atrophy" or shrinkage of the brain matter in the cortical hemispheres was obvious, she said.
This low oxygen flow led to the loss of speech, thought, memory and emotion.
Doctors believe that patients such as her are no longer conscious of themselves or their surroundings. Typically, they do not interact with others or experience pain and have no hope of recovery.
The New England Journal of Medicine reported this week that EEG tests of Schiavo's brain have been "flat," indicating no activity in the cortical areas of higher function.
What Schiavo retains, Bigoney said, are some of the functions that originate in the brain stem: breathing, blinking, yawning, digestion and some reaction to light and noise. Schiavo also experiences periods of sleep and waking. She is not able to swallow food, so she must be tube fed. She is incontinent.
With these patients, appearances can be deceiving, those who care for them say.
"It's a little disconcerting," said Ruth Downs, volunteer coordinator for Hospice Support Care, a Fredericksburg hospice. "They open their eyes. They appear to be looking at you."
Added Bigoney: "It looks like they're looking around the room. Sometimes they will have startle reflex. Sometimes they may yawn or grunt or cry out. It's very difficult for people to accept that someone who looks awake is not."
More than 20,000 people in the United States are said to be in this persistent vegetative state. It's a term medical professionals have used for more than 30 years. Diagnosis is usually made after about three months of repeated observation and examination by a physician. Most patients are cared for in long-term care facilities or in their own homes by family members.
If the patient has said that he or she does not want life-sustaining measures, medical professionals will honor that request. Similarly, Mary Washington Hospital honors requests of adult members of the Jehovah's Witness faith who do not want blood transfusions.
"People have the right to refuse medical treatment," Bigoney said, "and people who have lost the ability to make their own decisions have the right to have medical treatment refused on their behalf."
In Schiavo's case, she did not have a living will. But Michael Schiavo, her husband, has said she told him she did not want extreme life-sustaining measures taken, and the courts have so far honored that.
"The decision to remove the tube is certainly within acceptable medical standards," Bigoney said. "He appears to be the appropriate person making a decision in the appropriate way."
Bigoney said she hopes the intense interest in the case does not signal a change in the way society handles these cases, moving away from individual decision-making to more public involvement.
"We very much honored individual rights to control one's own life," Bigoney said. "We may be moving in another direction."
The case appears to have encouraged families to have conversations about the care they want if they are unable to speak for themselves.
"It's happening all over the place," said Janet Coleman, family service coordinator for Community Home Health and Hospice, a Fredericksburg hospice. "It's an easy thing to do."
Added Bigoney, "That, at least, is a positive thing. Maybe that will be Terri's legacy."
To reach JIM HALL: 540/374-5433 jhall@freelancestar.com