VISION, DEDICATION AND PARTNERSHIP

This spring of 2023, I celebrate my 46th year as a nurse. I celebrate every year of my nursing career and with each year I become even more grateful for making the choice to pursue this path. I was recently reflecting on these years and paused to refresh my memory about the development of hospice and palliative care in relation to my own entry into the nursing profession in 1977. I recalled that the first hospice in America began on the east coast in 1974 but it was not until 3 years into my practice in the Midwest that I began to hear about this amazing new system of care and stories about the work originating far away from me at St Christopher's Hospice in the United Kingdom. I left the inpatient oncology setting in 1980 to begin home hospice care, inspired by those who were revolutionizing care for the dying.

As I was reading about the history of hospice to refresh my mind about these early beginnings, I Google searched for "the first hospice in America" and of course came upon descriptions of the founding of Connecticut Hospice in 1974. There it was, the fact I was searching for, the beginning of hospice in America. But then I continued reading, and I was reminded of what came before the "revolution" in this new way to care for the dying. I read about Dame Cicely Saunders from St Christopher's Hospice in 1963 as she introduced the idea that there was a need for specialized care of the dying during a lecture at Yale University. The next historical step I read about was 2 years later, in 1965, when Dean Florence Wald at the Yale University School of Nursing invited Dame Saunders to be a visiting faculty member at Yale, just before the founding of St Christopher's in 1967. I imagined what it must have been like for these 2 women to meet and discuss their vision for transforming health care. A year later, in 1968, Dean Florence Wald took a sabbatical from Yale and moved to the United Kingdom to work at St Christopher's Hospice. As these 2 visionaries who would change health care globally worked together to imagine hospice across the 2 continents, a third woman, Dr Elizabeth Kubler Ross was writing her book, On Death and Dying, published in 1969.

As I thought and read about these events, I was aware of the importance of that anniversary date of 1974 as the first hospice in America, but even more struck in reading about the years that preceded it. There were 11 years from the time Florence Wald heard Dame Saunders' lecture in 1963 and when she started Connecticut Hospice in 1974. I was reminded that Dean Florence Wald did not wake up on a day in 1974 and decide to start hospice. Florence Wald spent a distinguished career that led her to the point of being Dean at Yale University in which as a nurse she observed, participated in, and thought a lot about the care of patients who were dying. She did the necessary foundational work. She lived the work. Then she convinced others to become a part of the work. As I was reminded of this history, 3 concepts came to my mind-vision, dedication, and partnership.

VISION

Dame Cicely Saunders and Dean Florence Wald had a vision, an awareness of how care could look different. As Malcom Gladwell has said, "The visionary starts with a clean sheet of paper and reimagines the world." What a bold vision these leaders had to take a clean sheet of paper and describe health care for seriously ill and dying patients that focused on pain relief, treatment of symptoms, addressing psychosocial needs, spiritual care, and even reimagining where people should die. They spoke of concepts never discussed in health care settings such as interdisciplinary care. They broke the mold of care for the dying, challenging the idea that death should be ignored and dying patients isolated. They imagined a world where death is a sacred time.

DEDICATION

Robert Jarvik, scientist and developer of the artificial heart, was quoted as saying, "Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them." How aptly that must describe the early pioneers of hospice and palliative care. It must have taken enormous courage for these leaders to advocate for changing the social understanding of death and the health care system's paradigm of care for the dying. Dedication involves doing the work. It moves beyond sitting still to imagine better care, to rolling up your sleeves to provide the care, listen to patients and families, and bear witness to patients in pain and to the grief of families.

Margaret Mead, renowned anthropologist said, "I learned the value of hard work by working hard." I am reminded that Dean Florence Wald did not sit in her office at Yale University and direct others to start hospice in America. She stepped down from her role, packed her bag, moved to the United Kingdom, and lived the work. I had the opportunity to meet with Dean Wald a few times earlier in my career, and each time, I saw a nurse who was humble, generous, smart, compassionate, and very, very dedicated to her vision.

PARTNERSHIPS

I attended my first national hospice meeting in 1982 convened by the National Hospice Organization. At that time, now 41 years ago, this professional meeting still had somewhat of a feeling of a religious revival or a secret society as it was a gathering of kindred spirits that did not represent the norm of health care. The ideas discussed were still foreign, and the obstacles, immense. Being with like-minded people, sharing stories about the first patient we were each able to support in dying at home, the challenges of getting opioids, or the need to care for bereaved families felt like a secret society.

In these early years long before the internet (and still 5 years before I would ever see a fax machine!), collaboration was more challenging. We worried about the cost of a long-distance phone call, and reaching out to a hospice program we had heard about was often done by letter. Thus, the coming together at a meeting was amazing, and the partnerships that developed across states and communities began to weave a network across the country and tie together these passionate professionals and raise the voice for social change.

THE NEXT 50 YEARS

In 2024, we will celebrate 50 years since the founding of that first hospice in America. In my musings about the past and reminders of the rich history of hospice (and palliative care, a term that would not evolve until many years later), I am now wondering about the next 50 years. What visions will guide our field, now firmly established as a key element of health care worldwide, yet also challenged by the burdens of an aging society with diminishing resources to address the mounting demands of serious illness care.

What is the dedication needed to see the visions of the next decades move to reality? And very importantly, what structures are needed to support the dedicated work of tomorrow's visionaries? The lessons of the COVID pandemic have made it very clear that our workforce needs new ways of sustaining itself. And where are the partnerships? Where should we in the field of hospice and palliative nursing be reaching to develop new and strategic partnerships? What populations have not yet been reached?

Now is the time for each of us to do as Florence Wald did to take the time to imagine what the next 50 years of our field should look like. It starts with vision. As George Lucas said, "You can't do it unless you imagine it."

Betty R. Ferrell, PhD, RN, MA, CHPN, FAAN, FPCN