When life is on the line
Terri Schiavo got her day in court--or rather her years in court--but that time was mostly spent on tugs of war over states' rights, separation of powers, and legal precedents, issues utterly irrelevant to her medical condition. And so she departs this world not in peace but in bitter turmoil among those she loved and with lingering uncertainty as to her state of mind. Her last in-depth neurological evaluation was back in 2002. At that time her parents, and the two doctors the court allowed them to choose, believed she had some minimal level of consciousness that enabled her to feel joy and sadness, comfort and pain. In her family's embrace, they were sure she would live a worthy life, however disabled. Her husband and his two chosen doctors saw the opposite: a human reduced to the level of a vegetable, living but in a persistent vegetative state, awake but unaware, with one of two EEG s being flat. What is troublesome is that the plug--or, to be precise, the feeding tube--was pulled without a fresh evaluation of her mental status. In fact, two weeks ago one of the most prominent neurologists at the 2002 hearing argued vehemently against convening a new independent panel of experts to re-examine her. In my conversations with him, he dismissed the idea of getting another electroencephalogram as "crazy."
"Disturbing." There is legal reasoning behind the decision to deny Schiavo a final neurological exam. In 2002, the court declared with chilling finality that the husband's doctors, plus one selected by the judge, were right: case closed; no need for ongoing expert neurological evaluations. But these are tricky diagnoses, and many neurologists don't share the judge's absolute certainty. Neurologist James Bernat of Dartmouth-Hitchcock Medical Center, former chair of the American Academy of Neurology's ethics committee, told me that aware patients are diagnosed as unaware with "disturbing frequency." That means there's a significant risk of wrongly labeling a patient as being in a persistent vegetative state. It is simply not possible to experience with absolute certainty another person's thoughts, pain, or awareness of the outside world.
With this in mind, one last examination would have harmed no one. End-of-life decisions happen frequently and are rarely contentious. I have been party to them several times in my career. One of the most difficult was turning off the respirator of a young woman who had had an unexplained cardiac arrest. She was beautiful. She had a loving and religious family. And she had three flat EEG s. Her family took awhile to accept that her brain was gone. She lingered for over two weeks, as we grew attached to the person she must have been. When the time came, her parents were at her side. There was not a dry eye in the cardiac-care unit as we solemnly stood at the nurses' station and the line on her cardiac monitor went flat. As I turned around, my first sight was of a young intern sobbing uncontrollably, comforted by one of the seasoned nurses. I dare say medicine must always bristle about losing a life, especially if it is somehow by design. Families, loved ones, and, yes, caregivers deserve the benefit of one last assurance before that fatal step is taken. Indeed, in the case of Terri Schiavo, there was such an opportunity to provide that final gift to her family.
With all the ambiguity in diagnosing a brain-damaged person's state of mind, the law is unlikely to arrive at something we can call truth. The winner in court is usually the one with the most convincing medical witnesses, who speak with the greatest confidence and authority. One expert's opinion is pitted against another's, and the judge has to figure out which to believe.
This is not medicine's way. Consultants are not there to fight with one another but to collegially explain their differences. A reasonable approach is to get an independently named panel of physicians with no allegiance to either side and no discernible agendas. By itself, the adversarial approach offers little hope of bringing families to common ground. Indeed, back in 2002, the four dueling doctors chosen separately by Terri Schiavo's husband and her parents to offer the court evidence voted along party lines. That led of course to a split jury, not good enough when life--and death--are on the line.
This story appears in the April 4, 2005 print edition of U.S. News & World Report.