One year after the death of Terri Schiavo, the extraordinary publicity surrounding her case is affecting the conversations people are having, and the decisions they are making, about end-of-life care, experts say.
Terri Schiavo died on March 31, 2005, at age 41, nearly two weeks after doctors removed her feeding tube on orders of a state circuit court.
Her death came 15 years after she suffered a heart attack that left her permanently brain damaged. And it followed seven years of bitter court battles between her husband and her family—battles that prompted comment and intervention from the White House, Congress, and the Vatican.
Two organizations—the National Hospice and Palliative Care Organization (NHPCO) and the US Living Will Registry—report significant increases over the past year in the numbers of people seeking information about end-of-life choices.
And nearly 30% of Americans have thought about their own mortality enough to make their wishes known through living wills—compared with just 12% in 1990, according to a recent poll by the Pew Research Center for the People & the Press.
While some of the change is attributed to the aging of America, the Schiavo story continues to motivate people to explore their end-of-life options, make decisions, and inform others of what those decisions are, those interviewed for this article said.
“The Schiavo case is one of those situations that bring difficult discussions to people's kitchen tables,” said NHPCO spokesman Jon Radulovic.
The organization has had more than two million visitors to its Caring Connections Web site—www.caringinfo.org—launched about a week before Terri Schiavo's death, and more than one million people have downloaded the site's state-specific advance-directives forms, Mr. Radulovic said.
NHPCO also has seen a significant increase over the past year in calls to its toll-free help line—800-658-8898—started about 20 years ago. Before the Schiavo case, the line averaged 10 calls a day, said Kathy Brandt, NHPCO Vice President for Consumer Services and Professional Education.
Two weeks before Terri Schiavo died, calls increased to up to 1,200 a day, Ms. Brandt said, and the line continues to receive more than 100 calls a day.
“There was nothing we could have done to raise awareness the way this whole unfortunate situation in Florida did,” Ms. Brandt said. And while most people called and said, “I don't want to end up like her,” many said, “I want everything done for me.”
NHPCO had done a previous survey that showed that 80% of Americans had strong feelings about the kind of end-of-life care they want, Mr. Radulovic said.
“But through the Schiavo story they have learned there are steps they have to take. They have learned the importance of having a living will, but just as important is to talk to your loved ones. It's having the conversation that is so critical.”
Living Will Registry
Joseph Barmakian, MD, an orthopedic surgeon who founded the U.S. Living Will Registry in Westfield, NJ, agrees that interest in living wills has grown dramatically since the Schiavo case dominated headlines last year.
“There is definitely more public awareness and more interest, and I think the baby boomers are more cognizant of their rights than the previous generation,” he said. “There is no doubt in my mind that the whole Terri Schiavo case brought this to the top of public awareness.”
The Living Will Registry stores advance directives that can be located by Social Security number. The service is free to people who register their living wills through hospitals, attorneys, or other “community partners.” The registry's Web site—www.uslivingwillregistry.com—was recording 500 to 600 visitors a day before the Schiavo case, Dr. Barmakian said.
But as the public watched Terri Schiavo's family battle over her care, the registry site was getting around 50,000 visits a day. The site is now visited by about 4,000 people a day—still well above the number before that, he said.
About 80% of the site's visitors are individuals; the rest are health care providers, government agencies, attorneys, banks, and financial planners, he said.
Terri Schiavo's story is the subject of a new book by Bill Colby, the attorney for the family of Nancy Cruzan, who died in December 1990, at age 33, almost eight years after her car flew off the road, leaving her face down in a ditch and without oxygen for more than 10 minutes.
Her family's efforts to have her feeding tube removed were rejected by the U.S. Supreme Court but were finally granted by Missouri courts. Mr. Colby chronicled the Cruzans' story in Long Goodbye: The Deaths of Nancy Cruzan, published in 2002. His new book on the Schiavo case is “Unplugged: Reclaiming Our Right to Die in America, scheduled for publication on May 15.
The Cruzan family's battles began in 1987, only five years after the state of Missouri adopted a legal definition of brain death, and 15 years after the term “persistent vegetative state” was named, Mr. Colby said. The fact that right-to-die issues are still being discussed and debated represents “the beauty and the messiness of democracy,” Mr. Colby said in an interview last month.
“I have the sense that because of Terri Schiavo and the extent that her story was in the news, that questions about our dying have entered the public consciousness in a deeper way than they ever have before.”
The Pew Research Center poll of 1,500 adults, taken in November, found that people who had helped make treatment decisions for someone, or who had dealt with the illness of a loved one over the last five years, were far more likely to have a living will.
Of those polled, 95% said they had heard of living wills, compared with 71% in 1990. And 69% said they have talked with their spouse about their wishes, compared with 51% in 1990.
Support for right-to-die laws remains unchanged in people under the age of 50, with 85% favoring such laws, the poll found. But in the 50-and-older group, 83% felt that terminally ill people should have the right to die without medical intervention, compared with 72% in the 1990 poll.
“This probably has to do with the aging of the population and with more people confronting these situations,” Pew Research Center Director Andrew Kohut told the Associated Press.
But the Terri Schiavo effect is ongoing, Mr. Radulovic said. “In many ways, I think she did leave a legacy that will mean many people will have a different situation because of the kinds of conversations they had.”