Schiavo, Cruzan Cases Yield Valuable Lessons in Caring

Article excerpt

Mary Labyak walked down the hallway and into Terri Schiavo's room the day after she finally died. As the hospice director stared at Schiavo's bed, she saw a very old man, who had died there exactly six years before. She saw someone also at the center of a family conflict over how he would endure his final days. Mary Labyak saw her own father.

"I realized it was the same bed, the same room and actually the same date as my Dad had died on. My father was one of the most overtreated, extraordinarily treated elderly men in America. He was nearly 90 years old, spent the last year of his life on a ventilator and was repeatedly treated for every infection, given everything that could have been given. That was my mother's choice," Labyak said.


Labyak, president and CEO, The Hospice of the Florida Suncoast, Clearwater, Ra., since 1983, observed, "After having known tens of thousands of people as they were dying, I am increasingly struck that it is different for each and every person." When her father became one of those to die at Suncoast's Woodside Hospice House in 1999, Labyak had spent a year not only as the dedicated advocate for improved care of the dying but also as one of five children bound by their parents' choices. "We all saw things differently than my mother did, but ultimately she had the right to make the decision," she said.

Trying repeatedly to persuade her dad to fill out an advance directive to supersede attempts at excessive care, Labyak argued, "You know, Mother's going to run her feet off treating you, doing things I don't think you'd want." He'd reply, "Oh, let her run her little feet off."

At every hospital or nursing home in which he'd be transferred to meet his care demands, administrators would urge Labyak to try changing her mother's mind. At one facility, she recalled, "I had a nun who used to meet me at 6:30 every morning saying, 'You nave to force your mother to change her mind. Don't you hear the angels' wings?'" Moreover, she said, "We had to go to repeated ethics committees because people thought she was so wrong, and we finally came to a conclusion that he was going to go back to hospice." (Ironically, Labyak noted, many more cases with elders involve undertreatment than the kind of overtreatment her father experienced, because of ageism pervading the healthcare system.)

Labyak, who spoke last spring at the Joint Conference of the National Council on Aging and American Society on Aging, emphasized, "I've always seen my job as being an advocate for people, that they . . . have their wishes honored at the end of their lives and have every opportunity to live their life fully. I don't know what's the right way for anybody to die. But I can create a certain climate where people can explore what's right for them. I don't feel I'm an advocate for one side or the other."

Political figures and the national media surrounding Woodside Hospice Home saw things differently. Labyak, who serves as treasurer of the National Hospice and Palliative Care Organization (NHPCO), commented, "We felt very honored to have been the provider for Terri Schiavo, very challenged and sometimes outright terrorized. It was very frightening. But we always had a sense that this wasn't about us, it wasn't our story. We were there to minister to and care for her."


Terri Schiavo had collapsed from cardiac arrest in 1990 at age 26, possibly from a weakened state precipitated by her bout with bulimia-a condition her physicians had missed diagnosing. Schiavo's husband would win a multimillion-dollar malpractice suit but soon clash in a bitter argument over money and care. Schiavo entered Woodside in 2000. In her final year, what had started as a notuncommon family dispute manifested into a media and political circus.

Labyak recalled, "Every time you thought nothing more bizarre could happen, something would. We had people who identified themselves as Christian jugglers and demanded access because they did a juggling routine over very sick people to bring healing. …