The family of Terri Schiavo, the Florida woman who was artificially kept alive for 15 years, say they feel both heartbreak and vindication over the news this week that a Belgian man thought to be in a persistent vegetative state (PVS) was fully conscious for two decades.
Schiavo, who had been diagnosed with a profound brain injury, was at the center of a seven-year legal tug-of-war that involved Congress, the U.S. Supreme Court and even President George W. Bush before a judge granted her husband the right to allow her to die in 2005.
http://abcnews.go.com/GMA/OnCall/doctors-find-vegetative-paralyzed-man-awake-23-years/story?id=9159555" target="external">Ron Houbens -- thought to have no brain activity since a 1983 car crash -- had actually been paralyzed and was fully conscious, able to hear everything around him but not respond.
With the news that patients can be mentally "locked in" -- unable to breathe or eat on their own or communicate, yet fully aware cognitively --- some religious and ethical groups are saying, "I told you so."
And now the Catholic Church has weighed in, ordering doctors at its hospitals to ignore patients' advanced directives indicating they do not want artificial feeding if they are diagnosed as permanently unconscious.
"This is why we created our foundation, for stories like this man," said Bobby Schindler, executive director of the Terri Schindler Schiavo Foundation.
"Tens of thousands of people with cognitive injuries like these are using PVS to diagnose and kill," he told ABCNews.com. "We are learning how unscientific the diagnosis is. It's completely subjective and we are using it to sentence people to death and it's dangerous."
On the heels of both cases, the U.S. Conference of Bishops has issued a ruling that patients with chronic conditions like PVS who are not imminently dying should receive food and water by "medically assisted" means if they cannot eat or drink on their own.
"As a general rule, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally," states the new text of the Ethical and Religious Directives for Catholic Health Care Services.
The Schindlers, who are Roman Catholic, support the measure: "We believe we are morally obligated to care for these people."
Schiavo collapsed in her St. Petersburg, Fla., home of respiratory and cardiac arrest in 1990, and attempts to resuscitate deprived her of oxygen, causing profound brain damage.
She remained comatose for several months, before doctors diagnosed PVS. For 15 years, she was kept alive through a feeding tube.
Her husband, Michael Schiavo, successfully argued that she did not wish to be kept alive by artificial methods, but her family insisted until the end that their daughter was responsive and should receive nutrition as long as she was not dying.
Court Appeals, Congress Could Not Save Schiavo
Before 14 court appeals and a highly publicized intervention by Congress to briefly reinsert feeding tubes, Schiavo was removed from life support and died of starvation 13 days later.
An autopsy later confirmed Schiavo had extensive brain damage with no chance of recovery, but her family said that made no difference in their effort to save their daughter.
"Terri's autopsy revealed nothing that my family didn't already know -- that Terri had a profound brain injury," said Schindler.
"We always said it didn't matter. However, I think if Terri would have been given the opportunity of rehabilitation and therapy, denied to her since 1992, she could have improved."
At least one specialist told the family that he could "not rule out that Terri may have been in a "minimally conscious state," which is a higher level of consciousness than the PVS diagnosis.
The courts also ignored an affidavit from another neurologist who said she could teach Schiavo to swallow.
The Catholic Church generally honors patient advance directives, as long as they do not "counter the church's moral teachings," according to Father Thomas Weinandy, executive director of the U.S. Bishops Committee on Doctrine.
But in cases like the Schiavo one, doctor should "give them the care given to any other human person," he told ABCNews.com.
"We don't know if it's a vegetative state, or, as it the case of the guy from Belgium, consciousness could just manifest itself in a way people can't understand. To just let the person die when there is no condition causing them to die, would be a form of euthanasia."
But others, like Barbara Coombs Lee, president of Compassion and Choices, whose slogan is, "My Life. My Death. My Choice," say the church action imposes "dogma over dignity."
"The order runs counter to written instructions in hundreds of thousands of advance directives and the clear wishes of many individuals with no written document," said Coombs Lee.
"The primary consideration in health care decisions should always be with the individual's values, beliefs and desires, not fixed doctrine of any religion."
The ruling would pertain to the 565 Catholic hospitals -- about 20 percent of all admissions nationwide, according to the Catholic Health Association, but Coombs Lee said its impact on non-Catholics could be equally devastating.
"A lot of communities are served by Catholic hospitals only," she told ABCNews.com. "You don't have a choice when you are a trauma victim."
The directive also applies to ambulances that serve those hospitals, hospices, nursing homes and insurance policies are affiliated with the church.
"The bishops are talking about patients, too, and if you are not Catholic, it doesn't make a difference, it applies to you," said Coombs Lee. "You are in the house, you follow house rules."
"People don't understand that when they make the choice to go to the Catholic hospital or hospice they are subjecting themselves to the ministry of the Vatican," she said. "Choices can be severely limited and these are agonizing and difficult decisions that have just been made a lot harder."
Doctors Comply With Advance Directives
All states grant legal immunity to doctors for following advance directives, but doctors can decline.
More often than not, doctors comply with patient wishes, but many patients still don't make them known, according to Dr. Joy Hirsch, director of the Program for Imaging and Cognitive Sciences at Columbia University.
"Oftentimes we try to have patients in to reevaluate their advance directives if they were made outside the context they are in," she told ABCNews.com.
"Many times patients do change their mind," Hirsch said. "When you are 23 and say, 'Gee, whiz, if that happens to me I don't want to live.' But when it does happen to them, people still feel that life is very worth living, even if it means a wheel chair or severe incapacity. People do change their positions and the medical profession has to be sensitive about that.'"
Hirsch and her colleagues were the first group to use diagnostic technology to discern whether there is cognition and perception in patients who cannot speak for themselves.
In one case, they asked a patient to imagine a tennis game while doctors performed a functional MRI on his brain.
"When you put them in the scanner and either ask them to perform tasks or name an object silently in their mind, they can produce a brain pattern," she said. "We can differentiate if they are locked in or truly vegetative."
This technology, similar to what Belgian doctors used to determine their patients' hidden cognitive ability, is only "emerging," according to Hirsch and is not part of standard care and many patients like Schiavo are neglected.
Patients who linger in vegetative states are in the "backwaters of our medical treatment plans," she said. "We feel we cannot do anything for them and there is sort of a tendency to neglect them."
Still, she said that doctors need these new tools to help families make better decisions about whether their loved ones will recover from brain traumas.
"We need to take these disorders of consciousness seriously with an attitude not that we cannot do anything about them, but we may need be able to do something for them. There is hope."
Though some American doctors are skeptical of Rom Houbens' miraculous recovery, Belgian neurologists say he has been given a "second life."
And the story strengthens the Catholic argument that miracles can, indeed, happen when forced feeding is allowed to continue -- regardless of a patients' wishes.
For Bobby Schindler, who fought so hard to keep his sister on feeding tubes, knowing if she had brain activity might have made the difference.
"We loved her and just wanted the right to care for her as long as she lived regardless of whether her condition could be improved or not," he said. "Terri was basically warehoused and we were not allowed to test."
"She was not dying and there is a good chance she would have lived a normal life span," said Schindler. "She died because food and water was taken away."