The Underappreciated Influence of Elisabeth Kübler-Ross on the Development of Palliative Care for Children

In the history of palliative care, all roads lead back to Dame Cicely Saunders, a remarkable social worker/nurse/physician who promoted the concept of total pain and founded the first modern hospice. Her work revolutionized the care of dying adults.(Clark 2016) However, Saunders’ influence on the development of pediatric palliative care is more complicated. We are conducting an oral history project that explores the roots of pediatric palliative care. Thus far, we have interviewed 31 individuals who were instrumental in this field’s development. Through these interviews, we identified another famous physician who directly supported this early development: Elisabeth Kübler-Ross. Kübler-Ross was a Swiss-American psychiatrist who wrote the groundbreaking book On Death and Dying.(Kubler-Ross 1969) Her work increased Western society’s openness to discussing death. She also took an interest in the impact of childhood death on families, culminating in the book On Children and Death in 1983.(Kübler-Ross 1983) Yet, her influence on the care of dying children has been underappreciated. In this paper, we explore the influences of both these foundational figures through excerpts from oral histories.

Dame Cicely Saunders

Saunders’ influence was mentioned in 13 interviews. Charles Corr, an academician who contributed meaningfully to pediatric palliative care, commented, “It was Cicely Saunders who taught us that we have to think about physical, psychological, social, and spiritual dimensions of life and of care.”(Sisk 2019) Gerri Frager, an early pediatric palliative care physician, commented, “I don’t think we would have pediatric palliative care if we hadn’t first had it modeled, taught, and researched in the adult world.”(Sisk 2019) According to Danai Papadatou, a psychologist who pioneered pediatric palliative care in Greece, “Saunders and Kübler-Ross raised the awareness about the patient’s suffering, their needs and hopes, and advocated for their rights for a dignified life until the very end.”(Sisk 2019)

However, Saunders was not a proponent of extending the hospice model to children. She discouraged several early leaders from focusing on the care of dying children. Ann Goldman, a pediatric oncologist in London who developed the first multidisciplinary inpatient pediatric palliative care team, discussed her interest in pediatric end-of-life care with Saunders. “She thought it was a terribly bad idea… She said, ‘Oh well, there aren’t really enough children with diseases and I’m not sure that it’s necessary.’”(Sisk 2019) Sister Frances Dominica had a similar experience. She was a nurse and Anglican Sister who developed the world’s first hospice for children in 1982, named Helen House.(Burne, Dominica, and Baum 1984)

[Saunders] was the first person I wrote to when I had this idea of a[n inpatient] children’s hospice. I wrote a really carefully worded, carefully thought out letter to this very famous lady saying could she give me any advice. After about three weeks, I had a letter with three lines back just saying, “Don’t do it. Children should die at home.”(Sisk 2019)

Saunders’ reasons for discouraging the application of hospice to children are uncertain, but several interviewees offered their thoughts. Dominica commented, “[Saunders and I] became good friends in the end. I think part of it was that, as an individual, she was never comfortable with children. She never had any children of her own, and she wasn’t comfortable with them.”(Sisk 2019) Twenty years later, Dominica was on a conference platform with Saunders, and she discussed Saunders’ reply to her letter. When Saunders later took the stage, “she said, ‘Probably what I said to Sister was what I would say to somebody coming to tell me they wanted to get married – don’t do it unless you absolutely have to.’ That brought the house down, you can imagine.”(Sisk 2019)

Richard Hain, a physician and early leader in pediatric palliative care, was similarly discouraged early on by Saunders. In his view, “I think for people who don’t care primarily for children, the idea of a child dying is so wrong because it goes against the rules of the universe so profoundly. As caring adults… they can’t bear to think about it.”(Sisk 2019) Ann Armstrong-Dailey, an early advocate for pediatric hospice, befriended Saunders as she developed a non-profit aimed at opening hospice care to children. “[Saunders] was the first physician to honestly and openly say to me, ‘I cannot deal with a dying child.’… Honestly, at that time, [she was] the first person who owned up to that feeling.”(Sisk 2019) She followed this by stating, “I do not, in any way, want to imply anything negative about Dame Cicely Saunders. Because she really cared. She just was not able to actually do the care herself.”(Sisk 2019) “In the end,” recalled Sister Frances Dominica, “she became accepting of the idea.”(Sisk 2019) Perhaps signaling this growing openness, Saunders invited Ida Martinson to London in the early 1980s. Martinson led the “Home Care for Children Dying of Cancer” project in Minneapolis, MN in 1978.(Martinson et al. 1978) “[Saunders] was very interested in how I was working with the children,” recalled Martinson. “She just kind of excluded children for many years there. I went over because she felt she didn’t have sufficient pediatric experience.”(Sisk 2019)

Elisabeth Kübler-Ross

Kübler-Ross’ influence was noted in 13 interviews. Balfour Mount, the first palliative care physician in Canada and the person who coined the term palliative care, credits Kübler-Ross with sparking his interest in end-of-life care. “I was informed that there was going to be a lecture at the medical school that afternoon (in 1972) by Elisabeth Kübler-Ross … I had no idea who she was,” he recalled.(Sisk 2019) After attending the talk, he was inspired to study how patients were dying at his hospital. Following this newfound passion, he transitioned from working as a surgeon to pioneering palliative care in Canada.

Kübler-Ross’ work also reached those interested in pediatric end-of-life care. Gerri Frager was an obstetric nurse at the same hospital as Balfour Mount in the 1970s. After several experiences in labor and delivery where “in the midst of what should be great happiness, there was great tragedy,” she became interested in communication and care around death in childhood.(Sisk 2019) “I went to hear Balfour Mount and Elisabeth Kübler-Ross talk at a presentation about palliative care and end-of-life care. I just thought, ‘Wow, so it can be different. There is the possibility for this to be better than what we’re currently providing.’”(Sisk 2019) Frager subsequently attended medical school and completed training in pediatric pain and palliative care. She became one of the first pediatric palliative care physicians in Canada, serving as medical director of a pediatric palliative care service for 19 years.

Betty Ferrell provides another example of Kübler-Ross’ influence. Before becoming a nursing leader and palliative care researcher, Ferrell stumbled across On Death and Dying in a bookstore in 1980. “It was just like a world opened to sit and read this book… This physician was writing about how there are better ways to help people who are dying.”(Sisk 2019) Kübler-Ross’ later work on children reinforced this influence. “[Reading On Children and Death] was my first recognition at all that there was any attention given to dying children. And I actually went to a lecture that she gave here in Los Angeles and was so moved by this idea that these same principles could be extended to children.”(Sisk 2019)

Betty Davies is another nursing and research leader who drew early inspiration from Kübler-Ross. At a conference in Chicago in the late 1970s, her mentor introduced her to Kübler-Ross. “To be introduced to Elisabeth Kübler-Ross at that time was like a godsend.”(Sisk 2019) Following that encounter, Kübler-Ross served as a consultant for Davies’ research on bereavement in pediatrics, traveling to Arizona every six weeks to discuss the trajectory of her project. Davies’ work later culminated in the landmark book Shadows in the Sun.(Davies 1999)

For Ann Armstrong-Dailey, Kübler-Ross stimulated an interest in addressing the barriers to providing end-of-life care for children. After learning that almost no adult hospices accepted children at the end of life, she developed Children’s Hospice International (CHI) in 1983 “out of sheer, unadulterated anger.”(Sisk 2019) CHI is a non-profit organization that advocates for children to have access to high-quality end-of-life care. As CHI developed, Kübler-Ross made another impact. “Elisabeth Kübler-Ross became a really good friend, and a supporter. In fact, our very first donation came from her. She did a lecture at Ford Theater for [CHI] in 1983… and she just turned over all of the honorarium.”(Sisk 2019)

Conclusion

Dame Cicely Saunders and Elisabeth Kübler-Ross were both monumental figures in the history of palliative care. Collectively, their work influenced countless individuals who subsequently improved end-of-life care. However, their personal influences of the development of pediatric palliative care were quite different. While Saunders initially discouraged individuals from focusing on dying children (before eventually becoming more open to this need), Kübler-Ross inspired and promoted these same individuals, even donating money to these causes. This year marks the 50^th anniversary of the publication of On Death and Dying. As we reflect on this book’s impact on medicine and society, we should also consider Kübler-Ross’ influence on the development of pediatric palliative care.