The very public family and political battle over Terri Schindler Schiavo's care and her death in March has led to a massive surge of interest from people who want to plan better for their own medical and end-of-life care, according to panelists at a social workers' conference in Washington.
The organization Aging With Dignity saw the number of requests for its materials on living wills and other documents used to define people's wishes for their own treatment grow from the previous 50 a day to 6,000 a day, said Jon Cooper, a staffer for Sen. Bill Nelson, D-Fla., at a panel on end-of-life care Aug. 5 during the delegate assembly of the National Association of Social Workers.
In the months since Schiavo's death, the Florida-based aging organization now reports regularly receiving about 100 requests a day, said Cooper. Prior to all the attention to the Schiavo case, an estimated 15 percent to 20 percent of Americans had prepared advance medical directives, he added.
"The data is showing millions of people have now had these discussions with their family members," Cooper said.
Political and public interest in legislation intended to encourage people to prepare such documents has also seen fresh interest, he said. Bills include those that would allow Medicare to cover the cost of patient-doctor meetings to discuss end-of-life care and to provide such information through a federal clearinghouse and at motor vehicle departments.
Kathy Smolinski, a clinical social worker at the Sidney Kimmel Cancer Center at Johns Hopkins University in Baltimore, said interest in the topic has been so strong that the center keeps a table in a public area with material about advance medical directives and related topics.
Schiavo died March 31, 13 days after her hydration and nutrition tube was removed at a judge's order, after her husband prevailed in a years-long court battle with her parents over her treatment. She had been in what doctors described as a persistent vegetative state since 1990 and her husband said she would not have wished to be kept alive in that condition.
Her parents, Bob and Mary Schindler, fought to obtain legal custody, arguing that they believed she might respond to more aggressive therapy. By the time the final court order was followed, the situation had become the topic of round-the clock international media attention, with members of Congress trying to intervene legislatively and President George W. Bush returning from a trip to sign a bill allowing Schiavo's parents to present their case to a federal court.
Despite what another panelist described as the "siege" at Schiavo's hospice in Pinellas Park, Fla., Kathy Brandt, of the National Hospice and Palliative Care Organization, said professionals who take care of people in their last days decided to avoid the media limelight, rather than using it to talk about what they do, or to correct wrong information about hospice and palliative care that was being circulated.
"We were trying not to take a side for fear someone would not get treatment later on" if they found themselves disagreeing with what a hospice representative said in relation to the Schiavo case, Brandt said. She said representatives of the organization did some media interviews, but the segments often were left out of what was aired or written "because what others were saying was more provocative."
Two panelists described their own recent struggles with how to care for dying relatives.
Newsweek columnist Eleanor Clift's husband, Tom Brazaitis, died at home of cancer the day before Schiavo died, she said.
"I could identify with everyone involved (in the Schiavo case) including the parents," Clift said. She said she came to think of the week in which Schiavo, her husband and Pope John Paul II died as "the week that death came out of the closet."
Hugh Delehanty, publications editor in chief at AARP, a national advocacy group for people age 50 and over, recently wrote an AARP guide about caring for one's parents, relying on his own experiences with his father. He said he was somewhat surprised to realize that "most books on the topic were about the burden," though his own family experienced "a transfiguration."
Delehanty said because his ailing father would have resisted the idea of someone trying to help him prepare to die, he brought in a "stealth social worker" --- a professional who his father believed was just a friend who enjoyed sitting and talking with him. That social worker proved to be invaluable in both finding out Delehanty's father's wishes for his care and in helping him prepare emotionally for his death.
Moderator Elizabeth Clark, executive director of the social workers' association and a specialist in the needs of cancer patients, said the group would take no position on the morality of possible end-of-life decisions, but explained that, "however we felt personally," the attention to Schiavo "made many of us more hopeful that our clients would begin talking about and planning for the end of life."
She said those who work with people who are dying come to see it as sharing the "privilege of being with people at a transcendent moment."
Clift said she felt fortunate that her husband was clear about his wishes for treatment and that his care never came down to a question of whether it was right to withdraw a nutrition tube. She cautioned that the nation will continue to "go through this" on other issues related to dying, beginning with a case on the Supreme Court docket this fall about whether Oregon's right-to-die law is constitutional.
"In the end, the judiciary is making the decisions," Clift said. "These kinds of issues are really going to test our judiciary." ---CNS |