Kenneth Ross, photographer and founder of the Elisabeth Kübler-Ross Foundation, spoke Saturday at Northshore Hospital in Evanston, IL about his mother’s legacy, as part of a presentation organized by the Chicago International Association for Near-Death Studies.

Dr. Elisabeth Kübler-Ross (1926-2004) pioneered hospice and bereavement education in the U.S. Her most famous book, On Death and Dying, is widely accepted as a groundbreaking examination of death and mortality in modern America.

Her capacity to listen to people, even without talking, is difficult to describe

Ross said that the Kübler-Ross model, outlined in her book and commonly referred to as the “five stages of grief,” has been over-emphasized by many academics. When a person is faced with the reality of impending death, they may experience some or all of these stages: denial, anger, bargaining, depression and acceptance.

“It is a book of descriptions, reflections, and observations based on a series of dialogues with the dying,” Ross said. “She never intended the five stages to be concrete.” Many interpret the stages as linear and inevitable. “Some stages can be repeated, some individuals don’t go through all of them.”

But many of her contemporaries, Ross said, resented this model and her advocacy for the seriously ill. Some called her a”vulture” and sniped that she worked only to enhance her own image. The 1960s were a time of liberation for women, blacks and gays, and his mother, Ross emphasized, wanted the same to be true for those dying. “She was a humanist,” he said. “No hospital wanted to be known as the ‘dying hospital.'” Throughout the ’60s and ’70s it was common for doctors to provide false hope to patients dying of terminal disease.

Ross said his mother stressed genuine communication between the seriously ill, caregivers and medical professionals. “She had a gift for listening. It’s weird and I have never seen anything like it,” he said.

Ross said his mother was even able to mysteriously communicate with patients unable to speak, and he recalled a story of a woman who suffered from cancer of the jaw. “Her capacity to listen to people, even without talking, is difficult to describe,” he said. While counseling the former teacher whose mouth was wired shut, Kübler-Ross requested that doctors bring her an apple, even though she could not eat it. “The woman started crying. All she wanted was one more apple like when she was a teacher,” he said.

Ross also provided some lesser-known facts about his mother. “As she got older she loved E.T, and she would use her finger to touch people like E.T.,” he said. During the onset of the AIDS crisis, Kübler-Ross faced strong opposition for creating a home for babies suffering from AIDS in Virginia- and the hospice was burned down by arsonists.

“My mother grew up thinking people should die at home,” he said. “She saw how many dying patients were not cared for.” She was born in Switzerland and while traveling through Europe as a young adult, she observed the travesties of World War II.

The imagery of the butterfly– now depicted in the Kübler-Ross Foundation logo– struck her while visiting the Majdanek German extermination camp in Poland, where Jewish children were gassed to death. “She saw pictures of butterflies scratched into the barracks by children with their fingernails,” Ross said. “They knew what was going to happen to them.” He said his mother interpreted the butterflies as evidence of the children’s belief in an after-life, as if they were about to undergo a metamorphosis from catapillar to butterfly.

Ross said his mother believed in an after-life, and she promoted the use of spiritual guides for the terminally ill.