Fallout From Schiavo Case Hits Hospice Movement

by Hilary Abramson

(PNS) -- Even before Terri Schiavo died, the struggle over her life and death was causing confusion and fear among the people who run America's 3,300 hospice organizations.

"I think the Schiavo case has shaken our teams," says Claire Tehan, president of TrinityCare Hospice, the largest and oldest nonprofit hospice in Southern California. "I'm flabbergasted at the implication I've seen through the media that hospice killed her by standing by."

For the public, the biggest question may be how far hospice staff should go to prolong life. But the hospice community is unanimous: their role must remain neutral and their purpose is to support patient wishes. Now, many hospice organizations plan aggressive outreach efforts to teach people how to draw up end-of-life medical directives.

Many hospice patients themselves are expressing little doubt about their own choices in the wake of the Schiavo case.

"Let's put it this way," says Tehan. "I haven't heard about one hospice patient asking for a feeding tube because of Terri Schiavo."

Madeleine Meagher, a chaplain at TrinityCare Hospice, asked a handful of patients what they thought of the Schiavo case. "Many are ambivalent about dying -- we take this one day at a time, and being human, their feelings change," Meagher says. "One man, who had a feeding tube inserted about two years ago, said the case made him wonder if his decision was right. But he said on second thought, he wouldn't have wanted to live without the good times with family it afforded him."

One million terminally ill Americans are expected to use hospice this year, according to the National Hospice and Palliative Care Organization. They have had their fill of conventional medical treatment and want to concentrate on living without pain, surrounded by the people they love. Coast to coast, hospice administrators, social workers, nurses and chaplains describe working with patients whose experience typically differs greatly from Schiavo's: About 85 percent of these patients live at home, the majority are mentally competent and, if involved in family disputes over care, they go through mediation that is commonly successful.

"The impact of this case has been tremendous," agrees Jeanne Dennis, executive director of Visiting Nurse Services of New York (VNSNY) Hospice Care. VNSNY Hospice Care is reviewing its protocols and policies.

Beyond hospice workers' own responses to the Schiavo case, public reaction has been frightening, says Martha Barton, president and CEO of Pikes Peak Hospice and Palliative Care in Colorado Springs.

"It's hard for the staff, because we believe there is healing at the end of life and the opportunity for closure for people who are left behind," Barton says. "Staff members were confused when Jesse Jackson said Terri was being starved to death and dying of thirst -- language that was unsettling and inaccurate."

But the Schiavo case has also humbled hospice workers, and rightly so, says Brig. Gen. Mal Wakin, professor emeritus at the U.S. Air Force Academy in Colorado Springs. Wakin's 25-year-old daughter Susan died at the Pikes Peak hospice nearly seven years ago.

"The Schiavo case has raised the issue -- do we really know what we're doing here?" says Wakin, who has taught ethics for 46 years. "We know we'll never be absolutely certain we're doing everything right. We're not God, and neither are neurologists. We know that no one in this condition has ever survived, but in the last few years, the question has emerged whether there are stages above persistent vegetative state. I think the Schiavo case will trigger more research and attention to this. And I think the hospice community is saying it's going to be especially careful."

Still, the Schiavo case confirmed for Wakin that he and his family did the right thing for Susan, who was left brain-damaged, quadriplegic and blind after her heart stopped for 12 minutes during an optional operation to remove a pituitary tumor. After 11 years in a nursing home with a diagnosis of persistent vegetative state, Susan's condition worsened and the family invited hospice workers into her acute care facility. When hospice staff reported that the feeding tube was harming Susan, Wakin and his family decided to remove it.

At the end of life, Wakin says, "pain is the enemy more than death."