City of Hope’s Betty Ferrell, Ph.D., M.A., R.N., recently joined the National Academy of Medicine (NAM), one of the highest honors in health and medicine. The academy recognized her for her pioneering work in palliative and end-of-life care. It is one of many accomplishments and accolades she has received over the years, the last 30 of them spent at City of Hope. She is currently the director of Nursing Research and Education.
Interestingly, Ferrell’s work in palliative care and nursing research, for which she is internationally known, began literally in a closet in her native Oklahoma when she was an oncology nurse.
“It was my epiphany, in a closet at the American Cancer Society office in Oklahoma City looking through patient educational materials on mucositis,” she said. (It was common for patients on chemotherapy at that time to get mouth sores.) “I came across a booklet on hospice care. This was in 1977, and hospice had just begun as a system of care. When I saw it, I couldn’t believe it. This is what I was already doing, taking care of patients who were dying, because there were so few treatment options back then. I knew this is what I wanted to dedicate my career to.”
In the nearly 42 years since she found her “calling,” Ferrell has established herself as a world-renowned expert on palliative and hospice care. She relocated to California in 1987 and took a faculty position at University of Southern California. After two years of teaching, she longed to work in research. She came to City of Hope in 1989, working with Marcia Grant, D.N.Sc., M.S.N, R.N., and Geri Padilla, who started the Division of Nursing Research and Education. During her tenure, Ferrell has led valuable research focusing on early-stage to end-of-life cancer care, as well as long-term care for cancer survivors.
Literally wrote the book on palliative care
As the co-chair of the National Consensus Project for Quality Palliative Care, Ferrell developed national guidelines around palliative and end-of-life care. Drafted 20 years ago, “Clinical Practice Guidelines for Quality Palliative Care” recently published a fourth edition. It is the industry standard used by programs throughout the country. The author of four books, Ferrell’s "Oxford Textbook of Palliative Nursing" won first place in two categories — “Advanced Practice Nursing” and “Palliative Care and Hospice” — from the American Journal of Nursing‘s 2019 Annual Book of the Year Awards.
In 2000, Ferrell and Rose Virani, M.H.A., O.C.N., R.N., created the End of Life Nursing Education Consortium (ELNEC) in partnership with the American Association of Colleges and Nursing after their groundbreaking research showed a profound lack of education and training when it came to compassionate, multidisciplinary end-of-life care. Since its inception, the program has trained more than 24,000 health care professionals in all 50 states and 100 countries on how to improve the quality of end-of-life care they can provide across a spectrum that includes physical, psychological, social and spiritual care. Those trained have since trained more than 720,000 professionals themselves worldwide.
Ferrell has been at the center of the evolution of hospice and palliative care for four decades now, and has seen significant change in cancer care overall. “We are light years ahead of where we were when I got started,” she said. “Bone marrow transplant was still fairly new. There was no immunotherapy, targeted therapy or precision medicine, and this was long before outpatient became a major setting of care. Everything has changed dramatically.”
Currently, Ferrell and her colleagues are conducting a National Cancer Institute-funded clinical trial in which patients participating in phase 1 trials receive an added level of palliative care that includes supportive care, pain management, Child Life specialists and counseling, among other things.
“It’s about getting patients referred to services that can help them, beyond their physical treatment of their cancer,” she said. “And most of our clinical trials have a teaching component, so we can sit down and show them how to cope and manage physical problems like breathing, pain, constipation, sexual concerns and spiritual needs.”
As much as cancer care and treatment have changed, there are some challenges that Ferrell said need to be addressed. The terms “hospice” and “palliative care” are still often used interchangeably, something that Ferrell said hinders a patient’s quality of life. While hospice is exclusively care at the end of a patient’s life, palliative care can, and should, be administered from the time of diagnosis, and even after being cured of disease, she said.
“It is still a very common misconception that hospice and palliative care are one and the same,” she said. “That is a real problem because it means patients don’t get referred to palliative care until much later. Patients hear ‘palliative care’ and they think ‘Oh no, not yet. I’m not dying.’ We as clinicians still have a lot of work to do help them understand. Palliative care is appropriate for all people from the time of diagnosis. Many patients cured of their cancer live with residual effects stemming from their radiation, chemotherapy, fear of recurrence, and palliative care addresses that.”
Evidence that patients live longer
Advanced research like what Ferrell and her colleagues are leading shows that palliative care has great benefits to patients in all stages of disease, and there is growing evidence to suggest that patients who receive palliative care actually live longer.
The greatest challenge today, Ferrell said, is in training physicians and nurses to deliver general palliative care to their patients as part of their overall plan.
“We’re emphasizing primary or generalist palliative care so that every patient can receive it,” she said. “That means in hospitals across the country, we need to raise the bar for every nurse and every doctor to have competence to give a basic standard of palliative care and have specialists reserved for the most complicated cases.”
Ferrell helped develop a curriculum that is taught around the country to teach basic palliative care, which has not traditionally been part of academia in the past.
Nursing School Curriculum
“We have a large project funded by the Cambia Foundation, an online curriculum, and we have 380 schools around the country using it to teach nursing students at an undergraduate level,” she shared. In August 2019, a graduate program was launched, with a goal of having every nursing school in the United States teaching palliative care.
Ferrell said City of Hope has always been at the forefront. “Nurses and physicians would not be here if they weren’t really committed,” she said. “We know it’s not just about extending life — the quantity of life — it’s about improving the quality of life as well. We can treat cancer patients with the latest innovations available, but we also focus on the human being surrounding that tumor and the family they live with. Treating their disease and caring for the human beings they are is our obligation and our privilege.”