There are moments in our lives, and in society, when there are no words for us to use. These moments bring our busy, seemingly indestructible lives to an abrupt halt. In my lifetime, I have vivid memories of hiding under our second-grade classroom desks during the Cuban missile crisis and of the day President Kennedy was shot. Following the President’s shooting in Dallas, we were dismissed home to await what might be. As a young teenager, I watched the evening news to hear reports of the Vietnam War, as we feared seeing, in the scrolling list of casualties, the names of our classmates’ older siblings. And on September 11, 2001, I, like most of the world, watched as one plane, and then a second, flew into the Twin Towers and universally, we shared feelings of stark fear. We were speechless, we had no words to describe what was happening in our world. I will always remember the thousands of healthcare providers in NYC who stood by to receive the injured in ERs, but soon realized that most had died. Our conversation—and the conversation of all others—stopped as we watched in simple disbelief. The silence was deafening. Sometimes, there are simply no words.
There are, today, few words to describe palliative nursing in the time of COVID-19. I turned to “The Helpers Journey” by Dale Larson, a classic textbook for anyone in the field of palliative care.1 Originally published in 1993, the book has been a constant resource for me on my own professional journey in understanding what Dr. Larson describes as “empathy, compassion and the challenge of caring”. In the second edition of his text published in 2020, Dr. Larson continues to share his decades of wisdom related to the price, and the rewards, of accompanying those living with serious illness and those who grieve for lives lost. His work has provided a language to describe human suffering, both for those who live with illness and loss, and for the suffering of healthcare providers, including nurses, who dedicate their careers and their lives to this work.
I had received this second edition shortly before our world came to a standstill and our lives were disrupted in ways we never knew possible, as we faced COVID-19 — a threat to the entire world and a pandemic that also brought to light the basic principles of palliative care. In this second edition, Larson expands his writing, beyond the bedside care of one patient by one clinician, to describe caring within society and the world. He quotes Paul Ehrlich and Robert Ornstein,2 in saying:
“All of us, citizens of every nation, are now in the same family, are now in the same boat, walking the same tightrope, like it or not. The worst problems of the human predicament are common to all of us, from climate disruption, loss of biodiversity, and poisoning of the environment to pandemics, gross economic inequities, and the threat of nuclear war. Our tightrope is a line from humanity’s past to its future.”
This global crisis of COVID-19 is also a tightrope, I believe, between the world of health- care as it has evolved over the past century, to the world many of us have seen come to life— the world of palliative care. In the early days of COVID-19, I began to hear the language, which has so often been reserved for palliative care, spoken in virtually every news story and personal conversation — the world spoke of death, of difficult decisions on which lives would be spared, and of the profound grief of nations. Soon, the words moved beyond “the virus” and we began to hear the stories and see the faces of those whose lives were devastated by this disease. And then the world spoke of the price of caring, as nurses and all clinicians made terrifying personal sacrifices to care for those whose lives were in limbo as the virus threatened literally every country on earth. Families in living rooms across the world heard very rarely mentioned words about the personal threat to those who have dedicated their lives to caring for others.
I have no great words of comfort, no answers, and no soothing balm for those who suffer from COVID-19 or those who care for them. But I stand in awe of my colleagues in this field of palliative care who have been that tightrope and who have provided a language of caring for these times. I am grateful that from our work, ways have evolved to care for COVID-19 patients now suffering from dyspnea and pain. I am grateful for our field which has often been a silenced voice in speaking of death, grief, and the price of caring. I am grateful to every palliative care nurse who has supported our colleagues in ICUs, emergency rooms, and nursing homes, as they have all come to take on the common language of palliative care — the language of providing physical, psychological, social, and spiritual support as human beings care for other human beings, both threatened by this virus.
The world has been changed in just the early months of this pandemic. We are living with a great uncertainty and we know there is a long journey ahead. Each of us will be part of the story of these frightening and ever-changing times. I am confident that this will ultimately be a story of how much palliative care has helped a hurting world. And I am so grateful to be a palliative care nurse.
Betty R. Ferrell, PhD, CHPN, FAAN, FPCN
1. Larson D. The Helper’s Journey
. 2nd ed. Champaign, Illinois: Research Press Publishers; 2020.
2. Ehrlich PR, Ornstein RE. Humanity on a tightrope: Thoughts on empathy, family and big changes for a viable future
. New York, NY: Rowman and Littlefield; 2010.