Feisty Kubler-Ross pushed for death with dignity

Feisty Kubler-Ross pushed for death with dignity
 
Kathy Shayna Shocket and Connie Cone Sexton
The Arizona Republic- Aug. 25, 2004 12:00 AM

Elisabeth Kubler-Ross, internationally known expert on death and dying who became 
a pioneer for hospice care, and pressed doctors to listen to the needs of 
terminally ill patients, died Tuesday of natural causes. The Scottsdale resident 
was 78. 

Kubler-Ross' 1969 ground-breaking book On Death and Dying became a pop-culture 
phenomenon with her theory that the dying go through five stages of grief - 
denial, anger, bargaining, depression and acceptance. In recent years, she 
suffered a series of strokes and infections and in a 2002 Arizona Republic 
interview, she welcomed death and called God a "damned procrastinator" for not 
letting her die. She finally got her wish about 8:10 p.m. in her own bed 
surrounded by family and friends. 

Feisty, charismatic and empathetic, the Swiss-born psychiatrist took hold of the 
subject of death in the 1960s and never let go. She rallied for doctors and 
nurses to treat the dying with dignity, addressing their questions, fears and 
anxieties. But also their pain.

"She brought the taboo notion of death and dying into the public consciousness," 
said Stephen Connor, vice president of the National Hospice and Palliative Care 
Organization. 

On Death and Dying, the first of some 20 books she would write, was grounded in 
the real lives of the 500 terminally ill patients Kubler-Ross interviewed. She 
invited several of them to speak to medical and divinity students she taught at 
the University of Chicago. 

While many doctors recoiled at her frankness about death, she became an icon not 
only to those working in the field of death and dying but also to the terminally 
ill and their loved ones. Millions of her books have been sold, translated into 
several languages. In 1999, Time named her as one of the "100 Most Important 
Thinkers" of the past century.

"She got people talking about death and dying and took it out of the closet," 
said Susan Levine, executive director of Hospice of the Valley in Phoenix.

"It was the last taboo after sex and money, the things you don't talk about in 
polite company. I'm sorry the world will be without her. Personas like hers don't 
come along every decade."

Kubler-Ross was a rebel from a young age, ignoring her father's wishes to be a 
secretary. She became a country doctor in Switzerland, instead. In 1958, she 
married an American doctor and they moved to the United States where she eventually 
landed at the University of Chicago and developed a following for her seminars 
on death and dying.

But the university failed to see the scientific merit of On Death and Dying and 
Kubler-Ross was denied tenure. So she hit the lecture circuit to give "Life, 
Death and Transition" workshops, increasing her public profile across the country. 
She delved into research and wrote more books.

Near the end of the 1970s, she became interested in mysticism and spirituality. 
Her quest, in which she got help from "spiritual guides," repelled some of her 
admirers. She came to wonder if death existed, at all, or if the dying pass into 
another world. 

She sparked more controversy in 1980 when she bought a farm in Virginia to 
create a healing center where she planned to care for AIDS babies. The center 
burned to the ground in 1994. She suspected her work had angered the community.

She moved to Scottsdale in 1995 at the urging of her son, Ken Ross, who lives there.

While strokes weakened her body, they did not affect her mind and speech, said 
her son, a travel photographer. 

Three years ago she celebrated her 75th birthday with her family in Switzerland 
where she was born as one of three triplets. 

"I learned from my mother to see the world before you leave it and don't put 
things off tomorrow you can do today," Ross said.

She loved a home she bought in the north Scottsdale desert but in recent years, 
as she became frail, she moved into an assisted living complex where she died.

Her stages of grief were praised by some scholars for the recognition of the 
emotions that the terminally ill endure. But other academics charged the stages 
were too rigid. Kubler-Ross, however, stressed the stages were never meant to be 
a formula for everyone. Some people may even experience two stages at the same 
time, she said.

Ken Ross, 44, believes his mother had been in the "acceptance" stage of facing 
death itself for about 10 years. 

Some saw her as bitter or angry - not that she was going to die, but because 
after all the work she did for others in helping them die with autonomy and 
independence she was facing a lingering death and was dependent on others.

Her son recalled that after she suffered a bad fall and infection and nearly 
died about two years ago, she said she was ready to go, but then she recovered.

"She told us that she was like a plane that had left the gate and not taken off," 
Ross said.

The last two years Kubler-Ross was bed-bound and dependent on others for assistance 
in eating and other daily activities. And, true to the cause she championed, she 
turned to hospice caregivers, as well.

She tried to keep her mind active and was working with co-author David Kessler 
on a final book On Grief and Grieving for Simon & Schuster. 

She indulged in her favorite foods - lobster, blueberry blintzes and Swiss 
chocolate - but recently they were no longer appealing. She had no interest in 
eating and her body was shutting down. Last week, she began to struggle with 
intractable pain. 

"We didn't want to prolong her suffering," Ross said.

Brookes Cowan, a hospice volunteer from Vermont flew in last week to care for 
her good friend. "On Thursday I asked her on a scale of one to 10 how much pain 
she was in and she said 999," Cowan said. "I asked her if she was ready to 
transition and she surprisingly said 'no, not yet.' " 

"We think she was holding on until my sister was able to get here from Wisconsin," 
Ken Ross said, referring to Kubler-Ross's 40-year-old daughter, Barbara 
Rothweiler, who arrived Monday.

While it may not have been the timeline Kubler-Ross wanted, it was the way she 
pictured her last moments - with those close to her, a room with a big window 
and lots of flowers. And on her coffee table, sat the flowers from her friend, a 
wealthy Japanese entrepreneur and doctor who had been sending her flowers every 
week from Tokyo for the last eight years. 

Her books changed people's view of life and death, and she had a devoted 
following. Every week she received letters from people who knew her only because 
of her writing. Dennis Klass, a former research assistant for Kubler-Ross at the 
University of Chicago, can't shake the memory of a talk she gave about 10 years 
ago during a conference of the Association for Death Education and Counseling. 

Klass, a professor in the department of religious studies at Webster University 
in St. Louis, Mo., watched as Kubler-Ross walked to the stage.

"This frail little person comes into the room and they help her up the steps and 
she got up to (the) lectern," he said. "You could just watch her grow as she 
spoke. The old Elisabeth was there. She had a connection with the audience, she 
was most alive when in front of an audience. She could get them in the palm of 
her hand in seconds."

When she finished speaking, Klass watched her return to her seat. "You could 
almost see her shrink as she sat down. I sat there stunned. She was so important 
to the world of death and dying. She gave the dance of death five easy steps."

Reach the reporter at kathy.shocket@arizonarepublic.com.
Reach the reporter at connie.sexton@arizonarepublic.com or by calling 
602-444-8894.