Group advocates planning end-of-life wishes

Of the 24,000 Kansans expected to die in 2004, 80 percent will not die suddenly. All but 14 percent will experience moderate to excruciating pain in their final months.

Thirty percent will spend their life savings on end-of-life efforts to avoid death and ease pain. Most will have insurance — Medicare, primarily — but it won’t matter. The money still will be gone.

“Surely we can do better than this,” said Donna Bales, president and CEO of LIFE Project, a Wichita-based program for dealing with end-of-life issues in Kansas.

Bales was in Lawrence Wednesday to moderate an afternoon discussion at the Lawrence Public Library. About 30 people attended the two-hour session.

“What a tremendous turnout,” Bales said.

Several in the audience shared stories of how their loved ones’ wishes that their lives not be prolonged by artificial means — ventilators or feeding tubes, for example — were disregarded by doctors, nurses and out-of-town relatives.

“You have to have an advocate who knows what you want and who can talk for you,” said Nadereh Nasseri, a nurse with Hospice Care in Douglas County.

Molly Wood, a Lawrence attorney who specializes in end-of-life planning, said it was critical for people to tell friends and relatives their feelings about death and to put those feelings in writing.

“The document is there to support what you’ve been telling those around you,” Wood said.

Many in the audience expressed frustration with the medical establishment keeping their loved one alive after it became clear the person wanted to die a pain-free death at home and with family.

Genevieve McMahon shared that her sister, former Kansas University dean of women Emily Taylor, had died a peaceful death.

“No matter how many dreadful stories we hear, it doesn’t have to be that way. It can be done,” McMahon said, noting that her sister made clear that she did not want food and water in her final days and that she wanted to be kept pain-free.

“She died precisely as she wanted,” McMahon said. Taylor died May 1 at age 89.

The discussion was the second of 20 planned throughout the state before Sept. 30, after which an action plan will be developed.

The group is considering a second discussion in Lawrence. Those interested in attending are encouraged to call Kansas Advocates for Better Care Inc. at 842-3088.