Inside Terri's brain
She's probably not in pain. Still, doctors can't read her mind
When Terri Schiavo finally opened her eyes one month after her husband found her unconscious and gasping for air, it undoubtedly looked as if she was getting better. She had suffered cardiac arrest in the early morning hours of Feb. 25, 1990, and defibrillation was performed seven times in the emergency effort to resuscitate her. Her potassium level was a dangerously low 2.0, likely the result of a history of eating disorders and the cause of her sudden collapse. As a teenager and young adult of 5 feet, 3 inches, her weight had gone from over 200 pounds to 110 pounds.
After a month in a coma, "the eyes open, and the family interprets it as a sign of improvement," says Ronald Cranford, neurologist with the Hennepin County Medical Center in Minnesota and one of several doctors who examined Schiavo. Yet the open eyes and the normal sleep-wake cycle are cruel symptoms of a neurological condition called persistent vegetative state, or PVS. Other deceptive signs are eyes that can tear and a mouth that can curl into a grimace that family members would love to interpret as a smile.
Videotape. Families can read a lot more into facial movements: knowing, feeling, understanding, recognition. But, say neurologists, these are automatic reflexes of the brain stem, the part of the brain that mindlessly keeps the heart beating and the lungs breathing. Some of Schiavo's reflexive moments have been captured on videotape, run in newspapers, and shown on television screens.
Ten years of court decisions have upheld the PVS findings of neurologists who examined her and dismissed the claims that she was not in a PVS and could be successfully treated.
Coma and PVS are two distinct neurological disorders. A coma is unconsciousness with eyes closed. People can come out of comas and do well, they can come out of comas with brain damage, they can slip into persistent vegetative state and open their eyes while not regaining consciousness, or they can die. Another neurological state is called minimally conscious, in which the patient can have dementia but be capable of responding to simple commands or following objects with the eyes. Together, they lead to public confusion about who can get better, and who almost never will.
No one can truly know another's awareness, and technology has not advanced to the point where a test of any kind can definitively pinpoint PVS. Instead, doctors make a diagnosis of persistent vegetative state, just as they do with Alzheimer's or Parkinson's disease, with what they call clinical certainty. They perform a very detailed physical examination looking for any signs of awareness that can then be repeated. "The examination is tedious. It's time consuming," says James Bernat, professor of neurology at Dartmouth Medical School. "For example, if you say, 'Open your eyes,' and they happen to open their eyes, you have to do it again and again." The hands-on diagnosis is buttressed with laboratory tests including electroencephalograms, a measure of the brain's electrical activity, and CT scans. Schiavo's CT scans showed severe atrophy of the brain. Her EEG s, says Cranford, have been flat.
Smooth passage? Doctors who have sat at bedsides after feeding tubes have been removed can offer a studied guess at what a dying person feels. Most believe that when food and drink stop, the body's own chemical reactions smooth the way toward death. "All mammals eventually stop eating and drinking," says Ira Byock, director of palliative medicine at Dartmouth Hitchcock Medical Center. "Nature has provided us with a very gentle way for life to end." When someone is in a persistent vegetative state, with no conscious awareness, there is no pain, no hunger and no thirst. "In [Schiavo's] case, there's no reason to believe she'd feel anything," says Joanne Lynn, geriatrician and researcher with Rand Health. "It's as if she were anesthetized."
Even when a person is extremely sick but aware, feelings of hunger dissipate after about 24 hours. "The dying process creates an involution of normal hunger and thirst," says Bernat. Movement of the gut slows, as does plasma volume, decreasing the sensations of hunger and thirst. Normal palliative care in such cases includes moistening the lips, mouth, and throat for comfort. And if there is a concern about pain, physicians can treat with drugs.
Persistent vegetative state has been argued in court cases going back 29 years. The first was in 1976 when the parents of Karen Ann Quinlan asked that their daughter be taken off a respirator. In 1990, the U.S. Supreme Court ruled that Nancy Cruzan's parents could have her feeding tube removed. In all such cases, the courts have asked for evidence that the actions are what the patient would have wanted.
In the Schiavo case, that standard has been met, according to the many court rulings, with testimony from her husband and others that she would not wish to continue living as she is. Americans have come to expect the right to accept or reject medical treatment, regardless of their condition. "You can exempt yourself from medical care, except for the rare circumstance that you have a dangerous disease that is contagious, or a mental illness where you might hurt someone," says Lynn.
In an article from the April 21 New England Journal of Medicine, released last week (early because of the Schiavo case), Timothy Quill, director of the Center for Palliative Care and Clinical Ethics at the University of Rochester Medical Center, wrote that the New Jersey Supreme Court asked the right question in 1976. In the case of Quinlan, the court asked, "If the patient could wake up for 15 minutes and understand his or her condition fully, and then had to return to it, what would he or she tell you to do?" It is a question every American would do well to discuss with loved ones--and have the answer in writing.
This story appears in the April 4, 2005 print edition of U.S. News & World Report.