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| Elisabeth Kubler-Ross | 1926-2004 |
Elisabeth Kubler-Ross, a psychiatrist who revolutionized the way much of the world looks at terminally ill patients with her book On Death and Dying and later as a pioneer for hospice care, died of natural causes Tuesday, Aug. 24, at her home in Scottsdale, Ariz. She was 78.
Published in 1969, On Death and Dying focused on the needs of the dying and offered her theory that they go through five stages of grief — denial, anger, bargaining, depression, and acceptance.
“Those who learned to know death, rather than to fear and fight it, become our teachers about life,” she once wrote. In another passage, she wrote, “Dying is nothing to fear. It can be the most wonderful experience of your life. It all depends on how you have lived.”
Kubler-Ross moved to Arizona nine years ago after a series of strokes left her partially paralyzed on her left side. In a 2002 interview with The Arizona Republic, Kubler-Ross said she was ready to die.
“I told God last night he’s a damned procrastinator,” she said then.
Kubler-Ross wrote 12 books after On Death and Dying, including how to deal with the death of a child and an early study on the AIDS epidemic.
“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.
In 1979, she received the Ladies’ Home Journal Woman of the Decade Award. In 1999, Time magazine named Kubler-Ross as one of the “100 Most Important Thinkers” of the past century.
Born in Zurich, Switzerland, Kubler-Ross graduated from medical school at the University of Zurich in 1957. She came to New York the following year and was appalled by hospital treatment of dying patients.
“Whoever has seen the horrifying appearance of the postwar European concentration camps would be similarly preoccupied,” she said.
She began her work with the terminally ill at the University of Colorado Medical Center in Denver, and was a clinical professor of behavioral medicine and psychiatry at the University of Virginia in Charlottesville.
Kubler-Ross began giving lectures featuring terminally ill patients, who talked about what they were going through. That led to her 1969 book.
“Dying becomes lonely and impersonal because the patient is often taken out of his familiar environment and rushed to an emergency room,” she wrote.
“He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart machine, or tracheostomy. ... He will get a dozen people around the clock, all busily preoccupied with his heart rate, pulse, electrocardiogram, or pulmonary functions, his secretions or excretions — but not with him as a human being.’’
The most important thing Kubler-Ross did was to bring death out of the dark for the medical community, said Carol Baldwin, a research associate professor of medicine at the University of Arizona who also worked as a nurse in one of the nation’s first hospices in 1979.
“She really set the standards for how to communicate with the dying and their loved ones,” Baldwin said recently. “Families learned that it’s not a scary thing to watch someone die.”
Kubler-Ross is survived by her two children, Kenneth Ross and Barbara Lee Ross, and two granddaughters.
In a 2003 Associated Press interview, her son said that his mother, in her final months, was reaping the benefits of the movement she helped start, finding comfort in the constant companionship and dependable care of a group home.
“We get letters and e-mails from around the world,” he said. “There’s people who say, ‘I was going to kill myself’ because they’ve lost children or their husband or wife, and they read her book and it gave them a sense that they should go on.”
Associated Press
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Some of the physicians at her hospital jokingly refer to the palliative care team as the “Death Team,” she said, and tell her, “Go away, we’re not ready for you yet.” She responds, “We can do a whole lot more than just be here at the end.”
Many palliative care nurses believe palliative care, whether by a team or an individual nurse, should begin at the time of diagnosis. Most patients seen by the palliative care team at UCSF are unresponsive, and the team must figure out from their families what their wishes might be, said Julie Koppel, RN, BSN, acting patient care manager on the general medicine unit of the UCSF Medical Center.
It’s important to educate the public and health care professionals to understand that palliative care “doesn’t mean the end of life is just around the corner,” she said.
“Every nurse should be better informed because regardless of who your patients are, some will need palliative care,” Ferrell said. Doctors break the bad news to patients, she said, “but then they leave the room and who is left? It’s going to be the med/surg nurse at 4 in the morning. That’s when the patient is going to look at the nurse and say, ‘You don’t think I’m dying, do you?’ Or, ‘My doctor said I had a tumor. I’m so glad. I thought it would be cancer.’”
When UCSF started its palliative care program, the staff did not embrace it immediately, said Dee Campbell, RN, BSN, assistant patient care manager of the general medicine unit. “It sounded really heavy, and who wants to deal with that all the time?” But nurses now find it one of the most rewarding parts of their work, she said.
“It’s one area of nursing where you can really make a difference.”
One of the most memorable deaths on the unit was that of a young woman in her early 30s who had been diagnosed with cancer, said Campbell and Rose Moore, RN, BSN, a clinical nurse educator. She had gone through chemotherapy and was in remission when she became pregnant. During pregnancy, the cancer returned aggressively, but the woman refused treatment, fearing it would endanger her fetus.
After the baby was born, the woman went to the med/surg unit to restart chemotherapy. But the cancer had progressed beyond treatment, and she ended up in intensive care. The family decided to stop treatments and the woman returned to the floor as a comfort care patient. Although she was comatose, the nurses brought her baby to her every hour and laid it on her chest. When the baby was not with her, they put the baby’s clothes on her so she could smell her child.
Friends came into her room and played guitars. Often, she had as many as 20 visitors in her room, sitting on the floor and talking. Her husband and other family members kept vigil at night. When she died, they covered her bed with rose petals. A year later, her family sent the hospital staff a picture of the child, happy and doing well.
Before palliative care, Campbell said, such a death experience probably wouldn’t have happened. “Maybe one enterprising nurse could have managed it,” she said. “It would have been really heroic.”
Now, it is simply part of the system, Campbell said. “It has to happen.”
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