“We have not gone as far as we should have,” says David Magnus, PhD, talking about the evolution of palliative care and the hospice movement in the 50 years since the publication of a pivotal book, On Death and Dying. It was written by Elisabeth Kübler-Ross, MD, and it has strongly influenced the care of dying patients. Recently, the archive of Kübler-Ross’s oeuvre was donated to the Stanford Libraries’ Department of Special Collections, and several members of the Department of Medicine are already pleased to be able to focus renewed attention on her work and its importance.
The care of dying patients in the United States in the mid-twentieth century was vastly different from today. According to Magnus, “dying patients had no voice and were ignored at that time.” It was the work of Kübler-Ross, through writing and audiotapes and primitive videotapes, that gave these patients the opportunity to tell their stories about what they were going through.
Magnus, who is the Thomas A. Raffin Professor of Medicine and Biomedical Ethics and Professor of Pediatrics and Medicine, also directs the Stanford Center for Biomedical Ethics and is part of the clinical ethics consultation service. He notes the value of the Kübler-Ross archive to ethicists and palliative care physicians but also to a much wider audience: psychologists, psychiatrists, and those involved in narrative medicine. Still, others are especially attracted to “her writing itself,” he says, and those include “people interested in comparative literature and creative writing.” Among the treasures in the archive are unpublished lectures and essays that Magnus hopes to edit for publication.
“Karl Lorenz deserves all the credit for bringing this archive to Stanford University,” says Magnus. Lorenz put on a conference at which he met Ken Ross, Elisabeth Kübler-Ross’s son, and they struck up a friendship. It was Ken Ross and his sister Barbara Rothweiler who donated the archive to Stanford. Magnus continues: “Karl and Ken developed the original connection and relationships.”
Karl Lorenz, MD, MSHS, is professor of primary care and population health and section chief of the VA Palo Alto-Stanford Palliative Care Program. As a palliative care physician, he is acutely aware of Kübler-Ross’s “monumental role in making death and dying visible as an issue that all of us share or experience.”
“We still have much to learn from Kübler-Ross’s care of patients, even though her seminal book was published 50 years ago.”
Lorenz believes there is much to be learned from what she wrote and did. One basic theme in On Death and Dying, he says, “is that it is everyone’s responsibility to take part in alleviating the suffering of the dying. Everybody has both the capability and the responsibility. We have definitely not yet realized that.”
Among the 50 to 60 cardboard boxes of materials delivered to the Stanford Libraries’ Department of Special Collections are some mementos from Elisabeth Kübler-Ross’s early life in Switzerland, copies of her books translated into many languages, unpublished lectures and manuscripts, and letters to her from around the world that attest to her widespread influence. It will take months for curators and other library experts to accession everything received.
According to Lorenz, the archive includes “items that were either rescued or spared from a fire in West Virginia, which arsonists perpetrated against her because she planned to build a hospice for children with AIDS.”
One of the richest groups of items in the archive is a collection of videotapes and audiotapes, many of which contain Kübler-Ross speaking, interviewing patients, and lecturing from the 1960s and ’70s. Maren Monsen, MD, Director of the Program in Bioethics and Film and an award-winning documentarian who has been nominated for an Emmy for her 2013 documentary, “The Revolutionary Optimists,” is especially interested in what these tapes will reveal.
Karl Lorenz, MD, MSHS
Similar to the expressed thoughts of both Magnus and Lorenz, Monsen believes that “We still have much to learn from Kübler-Ross’s care of patients, even though her seminal book was published 50 years ago. Her orientation toward dealing with end of life was very self-reflective, compassionate, and process-based; I think we’ve lost touch with this approach. If we could learn from her way of interacting with patients, it would certainly help patients and it would also help with many of our current problems with physician burnout.”
Once the library archive group has digitized the tapes, Monsen says, “I will go through the archive and see what we have.” She then plans to “make a library of short pieces that will be made available for education nationally and internationally. I also plan to take a few of the really special stories of Kübler-Ross and create short films with painterly animation that will have a broader, more public, and film festival audience.”
In the longer run, says Monsen, “I’m interested in making a longer format piece about her life. She had a remarkable life story and was such a revolutionary woman in so many ways.”
Magnus, Lorenz, and Monsen plan a conference on both the legacy and the contemporary relevance of the work of Elisabeth Kübler-Ross later in 2019. Speakers will include a broad group of people who work on palliative care, communications, narrative ethics, psychiatry, and social science. The audience will likely be a range of clinicians, nurses, psychiatrists, those who care for the dying, and patients themselves.
The archive itself will be available for the further education of students and faculty for years into the future.