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Her work brought dignity to the dying

Elisabeth Kubler-Ross' On Death and Dying and her advocacy work gave birth to the hospice movement in America.

By LISA GREENE, Times Staff Writer
Published August 26, 2004

Elisabeth Kubler-Ross' crusade to convince Americans that the dying should be honored, rather than ignored, changed the last days of millions.

Her 1969 classic book, On Death and Dying, and her advocacy work following it, gave the public permission to talk about death and grieving and taught doctors that the terminally ill should not be neglected.

In the Tampa Bay area, Ms. Kubler-Ross was the inspiration for the organization that eventually became Hospice of the Florida Suncoast. For its first few years, it was the Elisabeth Kubler-Ross Hospice.

"We all owe her a thank you for being a call to conscience for America and American health care," said Mary Labyak, president and executive director of the hospice, which now serves 6,000 patients a year in Pinellas County. "She clearly had that spark and that vision that gave birth to the hospice movement in America."

Ms. Kubler-Ross died Tuesday, at her Arizona home, the way she would have wanted. The 78-year-old had long ago moved through the five stages of grief - the ones she made a part of the cultural landscape - and landed at the last one, acceptance.

"There is nothing to be afraid about death and dying," she told the St. Petersburg Times in a 1998 interview in Arizona, after a series of strokes had limited her mobility. "It only depends how you have lived. If you have lived right, you have nothing to fear."

In fact, she said, she wanted "to get it over with." Later, she put it more poetically, saying, "I'm going to dance in all the galaxies."

Hospice and medical leaders lauded her work Wednesday.

"Dr. Elisabeth Kubler-Ross was a true pioneer in raising the awareness among the physician community and the general public about the important issues surrounding death, dying and bereavement," said Dr. Percy Wooten, president of the American Medical Association. He said much of her work was a basis for the AMA's attempts to encourage doctors to improve the care dying patients receive.

Before Ms. Kubler-Ross, doctors often felt it was better to conceal the truth, said Dr. Ronald Schonwetter, director of geriatric medicine at the University of South Florida and chief medical officer at LifePath Hospice in Tampa. "At that point, it was felt it was in the patient's best interest not to give them that information, because they might not be able to handle it," he said. "We've learned we need to have these discussions."

It wasn't just that Ms. Kubler-Ross got people talking about death, said Paul Malley, president of the Tallahassee group Aging with Dignity. Especially in health care, she changed the focus of the discussion. She began talking about spirituality, relationships among loved ones, unresolved conflicts.

"She started talking about death and dying beyond medical issues," he said. "There was a focus only on curing patients, and the medical technology that was available. She was the first to say, "Wait a minute. There's more to this big picture.' "

While in graduate school, Labyak spent a week training with Ms. Kubler-Ross and watching her work with the dying. What she remembers most: her "immense ability to listen.

"It's about listening to what's important to them, trying to make their hopes and aspirations true," Labyak said. "She always said, "Dying people are our teachers, not vice versa.' ... Listen to the people we serve ... instead of saying we're the experts."

Ms. Kubler-Ross, born a triplet in Switzerland, went to medical school there and came to the United States as a psychiatrist in 1958. She developed a passionate interest in the terminally ill while working in a New York hospital, where she said dying patients were "shunned and abused" without being told they were facing the end.

After her first book, Ms. Kubler-Ross lectured across the country and wrote more than 20 other books, including one about AIDS and another about when children die. In 1999, Time magazine named her as one of the "100 Most Important Thinkers" of the past century.

Tampa nurse Judy Smolk, then a new graduate, heard Ms. Kubler-Ross speak in New York in 1976. Smolk remembered a small woman with a plain manner.

"But she was obviously passionate about what she had to say, and her reasoning was almost pure," Smolk said. "You couldn't help but listen."

And Smolk did. She went on to become one of seven volunteers who founded LifePath Hospice and Palliative Care in Tampa. It now serves more than 6,200 patients a year in four counties.

Ms. Kubler-Ross had an immediate impact when she came to South Pasadena in Pinellas County in the 1970s. As the late Bunny Flarsheim sat in the audience of a Kubler-Ross lecture, somebody suggested to her that she start a hospice program. She did, naming it after Ms. Kubler-Ross, who became her mentor and friend.

"She really took this very scary, taboo subject of death out of the closet and prompted America to think, "What would you want? What's your responsibility to family members? What's your responsibility to community?' " Labyak said.

Still, Ms. Kubler-Ross hasn't been universally embraced. Doctors have argued at times that her five stages of grief - denial, anger, bargaining, depression and acceptance - are too simplified and don't apply to everyone.

But then there are people like Carol Dunn. When Dunn's 3-year-old son, Andrew, drowned in 1971, Dunn felt not only heartbroken but isolated.

"Back then, there wasn't anything," she said. "You feel totally alone. I was very young, and people didn't want to hear about it."

In 1984, the unthinkable happened again: Dunn's 19-year-old daughter, Marikaye, died in a freak accident. This time, a nun in her church put her in touch with Compassionate Friends, a support group for grieving parents. Dunn is now a Pinellas County chapter leader.

Ms. Kubler-Ross "had a tremendous impact on bringing to the general public ... the importance of allowing people to grieve," Dunn said. "She was the forerunner in getting the word out ... that it's not something that's just going to go away."

Information from the Associated Press and the New York Times was used in this report. Times researcher Mary Mellstrom also contributed.


Elisabeth Kubler-Ross theorized in 1969 that terminally ill patients go through five stages of grief:

1. Denial

2. Anger

3. Bargaining

4. Depression

5. Acceptance

[Last modified August 26, 2004, 00:27:25]

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