March 21, 2005 — -- Terri Schiavo is not the first young woman to be the fulcrum of a nationwide debate over medical ethics and a patient's right to die.
Karen Ann Quinlan, 21, entered a persistent vegetative state after mixing alcohol and drugs at a party in 1975. Her family fought hospital administrators to have her removed from a respirator, winning their case in the New Jersey Supreme Court in 1976.
In 1983, Nancy Cruzan, 25, entered PVS following an auto accident. Though her family decided to remove her feeding tube, state hospital officials in Missouri refused. The case went to the U.S. Supreme Court before her feeding tube was eventually disconnected in 1990.
But medical dramas involving terminal cases that play out in headline news reports are exceptional. According to most experts, the vast majority of these cases are handled quietly among the doctors and families involved.
"There are an estimated 4,000 deaths each day where there's a conscious decision to limit treatment in some way," said Dr. Ron Cranford, professor of neurology at the University of Minnesota in Minneapolis.
"We have an estimated 14,000 to 35,000 adults and kids in a persistent vegetative state every year," he said. "It's a routine thing to discontinue treatment. These decisions are made behind the scenes."
Other estimates place the number of adult patients in PVS in the United States between 15,000 and 25,000. The annual cost of caring for these patients is estimated to be as high as $7 billion.
Cranford is among the neurologists who personally examined Terri Schiavo -- in 2002 he confirmed the Florida woman was in PVS. "There's no doubt -- not a shred of doubt," he said. Schiavo's feeding tube was removed Friday after a years-long legal battle between her husband and her parents.
Dr. Stephen S. Lefrak, professor of medicine at Washington University School of Medicine and chair of the ethics committee at Barnes-Jewish Hospital in St. Louis, confirmed that ending the care of a patient -- also known as "terminal wean" -- is a decision made daily in most hospitals.
"There is a certain routine-ness to withholding care," said Lefrak, adding that these decisions rarely involve lawyers or court cases. "Ninety-nine-point-five percent of the time these things get ironed out."
Then why do a handful of these cases plunge the nation into a lengthy, complex legal and political morass?
"They will get there usually when there's significant family dysfunction," said Lefrak. Long-smoldering family tensions often reach a flash point when terminal care decisions need to be made, he adds. "It's a very trying time."
"There are a lot of families out there who have a hard time accepting a case of persistent vegetative state," said Cranford "They look like they're perfectly normal in a way, but they're not. In those cases, we don't usually push it."
In almost all situations, medical professionals and families strive to keep PVS cases away from lawyers and courtrooms.
"You try to do the right thing. You try not to get the courts involved. Lawyers and judges have their own point of view," said Lefrak.
"These cases are hard for judges," said Cranford, "because there's a lot of sympathy for both the parents and for the spouse."
There are some strategies medical professionals have developed for keeping PVS and other end-of-life cases out of court.
"Number one is to get the medical facts. Sometimes the medical facts are sort of gray," said Lefrak. "For example, does Terri Schiavo have persistent vegetative state or not?"
"Number two are any hints of what the patient would have wanted," he said.
And Lefrak highlights the importance of working toward a consensus of agreement in every PVS case. This involves bringing in as many people as necessary, including clergy, social workers, ethical consultants and every member of the medical team, including all nurses and doctors.
"I will ask, 'Do you have a minister or would you like to use one of our spiritual care providers?' " said Lefrak. "The whole process has to be transparent. It means more work, and more people have to get involved.
Family members who feel left out of the decision-making process are usually the ones who go to lawyers, he said. "It's when somebody's out of the loop that they go and seek outside help."
Even though cases like Schiavo's are rare, they will continue to come up, Lefrak believes, since the death of a family member is always a milestone in that family.
"We're going to have lots of Terri Schiavos," said Lefrak. "But the family is going to only have one."