Remembering Eric J. Cassell, MD, MACP in Life & Death: Prolific Palliative & Hospice Care Pioneer Helped Lay Foundations for Palliative & Hospice Nursing Practice
Helping the Doctor to Die in Peace as He Had Helped & Taught So Many Others to Do: The Final Days
In 1982, Dr. Eric Cassell, MD, MACP, published a pioneering essay on suffering in The New England Journal of Medicine. Cassell wrote that "suffering is experienced by persons, not merely by bodies and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity" (Cassell, 1982). Cassell's analysis of the meaning of illness is particularly relevant to nursing. According to Betty Ferrell, PhD, RN, CHPN, FAAN, FPCN, Research Scientist and Professor, City of Hope, "Eric gave voice to the patient experience of illness and changed the paradigm from disease care to person-focused care." Additional books, publications, and writings are located on his website (http://www.ericcassell.com/). His extensive body of work includes: The Healer's Art (1976); Changing Values in Medicine (1979); the two-volume Talking with Patients (1984); The Place of the Humanities in Medicine (1984); The Nature of Suffering and The Goals of Medicine (1991, 2004); Doctoring: The Nature of Primary Care Medicine (1997); The Nature of Healing: The Modern Practice of Medicine (2013); The Nature of Clinical Medicine (2014); and Professionalism and the Rebirth of Medical Education (2018), innovating a new curriculum at McGill University's Faculty of Medicine and Health Sciences. His final book, on humanities in medicine, was in process with Baylor University's Dr. Lauren Barron at the time of his death.
Dr. Cassell's legacy includes defining and alleviating suffering. For me, his daughter, his legacy is also personal. After working in hospital administration, focused on emergency department patient experiences for several years, I was convinced that the nursing profession was calling me. Sounded like a terrific idea except for one major challenge, I didn't enjoy being around sick people. Through trance and hypnosis work, another specialty dad was known for, we worked through my "sickness of others" issues and I landed my first nursing job as a trauma nurse in a busy New York City trauma center (during Hurricane Sandy). Dad's work helped me practice first-hand, distinguishing between pain and suffering as well as the ability to offer someone comfort from very complex to the simplest of ways (e.g., truly listening to what the patient felt they needed in the moment, sometimes just a cup of water, another pillow or warm blanket). I became very involved in many patient transfers from a nearby cancer center. The capacity was such that I realized many of these patients may spend their final days with us there in the ED.
Although the thought of death in the ED often saddened me, I wanted to offer these patients support and comfort. At Dad's recommendation, I ended up attending Dr. Betty Ferrell's End of Life Nursing Education Consortium (ELNEC) course in Washington, D.C. This training inspired me to develop a care manual, as part of my MSN project, to share with my ED colleagues.
Fast forward, many years, nursing roles, degrees, and increasing levels of responsibility later, my father's end of life was approaching. Upon arrival at his Pennsylvania home, several weeks prior to his death, it felt important to have shown up (and with the forethought of arriving in scrubs). Having made this trip from New York City many times over the course of the last thirty years visiting my parents, Eric & Pat, at their "country" home, this visit would indeed be different. At 93, my father, the prolific palliative and hospice care pioneer, had communicated his readiness to die. When I arrived, dad appeared to be in the pre-active phase of dying. Upon further assessment and listening to the wishes of the person I also considered a mentor, friend, and advisor, it seemed around-the-clock hospice nursing and comfort care was needed. I felt suitably, emotionally, and physically prepared to step forward as my father's primary hospice caregiver.
Knowing his wishes and preferences, what I had not fully appreciated was the degree of difficulty involved in taking off my daughter cap in exchange for a nursing one as he, the pioneer in the field of death and dying, was not necessarily ready (cognitively) to go peacefully. Preparation began with a quick refresher of my ELNEC (End of Life Nursing Education Consortium) training, and New York Presbyterian Hospital/Weill Cornell Medical Center's Palliative Care Nurse Champion Training. It seemed that every bit of foundational nursing knowledge I acquired over the years (emergency nursing, psychiatric, critical care, palliative, end of life), all came together. This prior experience coupled with an understanding of my dad's extensive body of work, including on the subject of death and dying, positioned me to help him die as he wished, and as he had wished for so many of his patients, peacefully, in his home, comfortable, surrounded and supported by loved ones, and as little suffering as possible.
Due to bouts of agitation, pain, hallucinations, ever-changing vital signs, and ongoing toileting issues, formulating dad's care plan turned out to be no easy feat. The team of hospice nurses visiting daily, phone consults with renowned physicians, my mother's, and a small group of family and friends', love, and support, enabled me, particularly as the team lead, to attend to the 24/7 needs of my, often feisty, sometimes agitated, father/patient. In addition to PRN medications, we used small comforts like sips of his favorite "nectar of the Gods" as he liked to call it (e.g. fresh squeezed orange juice), spoonful's of Haagen Daz chocolate ice cream, ice water, and classical music tracks like Beethoven's piano concertos. Additionally, dad was working up until his final days. In one of his more lucid moments, he said, "I appreciate this Rebecca, I really do," and "let's be sure we write our shared experience up for others to read." Three weeks after my arrival, my father, passed away peacefully, with a slight grin on his face, as autumn leaves fell gracefully outside his bedroom windows, he left us with a full body of love, an extensive body of knowledge, and the ability to continue advocating for supportive, person-centered, palliative and hospice care for our patients, loved ones, and each other, with as little suffering and as much comfort as is humanely possible.
Rebecca A. Owens, DNP, MBA, MSN, RN-BC, CNO
New York State Psychiatric Institute
Betty Ferrell, PhD, FAAN, FPCN, CHPN
Editor in Chief