Life is great at 88 … when you’re Madalon O’Rawe Amenta, a resident of University Retirement Community in Davis.
Her life — past, present and future — represents purpose, accomplishment and an eagerness to shape the world around her. Not everyone can at once stake a claim as poet, nurse, researcher, author, lobbyist, mother, academician, national leader, pioneering entrepreneur and Yolo Hospice board member. But Amenta, a lover of life, is all of these things and more.
So it is no wonder that the California Hospice and Palliative Care Association has decided to honor her with the Pierre Salmon Award during the association’s annual conference in Palm Springs this October. The award is the association’s equivalent to the hospice hall of fame in California and Nevada.
Not too many decades ago, quality standards for hospice care did not exist. Clinicians had no national standards and no official guidelines to follow. Frustrated by this reality, four California nurses locked arms to work on what would become the country’s first set of quality assurance manuals.
When they were finished cobbling together guides that could be used by hospice nurses everywhere, they handed their work over to Amenta, the first president of the Hospice & Palliative Care Nurses Association, which certifies nurses in the field.
Amenta took the work of these four nurses and spread it out on her dining room table where she spent the next six weeks pulling together “Quality Assurance for Hospice Patient Care.” First published in 1988, the manual served as the go-to standard for hospice nurses. Each page represented a framework that is still used by hospice professionals today.
She says, chuckling, “We sold it for $25 a copy. As an organization, we had no money in the early days. Our only source of income came from charging $35 for membership fees and there were fewer than 100 members.”
Now, nearly 12,000 members belong to the association.
“From my first nursing student days I felt that the American health-care system, for all its wonders of technology, failed patients as people,” Amenta said. “It didn’t deal with the meaning of illness or the consequences of treatment. It needed to be reformed.
“Caring as well as curing needed to become institutionalized.”
An important part of Amenta’s early research explored the traits and characteristics of hospice nurses compared to those who work in traditional settings. The data collected from the research provided a useful basis for the selection of hospice staff.
The study revealed that hospice nurses to be significantly more imaginative, assertive, forthright, free-thinking and independent than their colleagues, who scored lower than the norms.
“It shows that it takes a special kind of person to work in hospice,” Amenta said. Her earliest inclinations were artistic. In her youth, she fancied herself an actor, poet and writer. However, “My forays into those fields never even began to pay the bills, so I decided to become a nurse,” she says.
Years later, out of a deep engagement of working on the book, “Nursing Care for the Terminally Ill,” she concluded that the essence of hospice care is found in a spiritual dimension, the source of love and caring.
“According to St. John, ‘work is love,’ and according to Khalil Gibran, ‘work is love made visible,’ and according to me, hospice work is love made operational,” she said.
As an early American voice in the hospice movement, Amenta served as a founder of both the national Hospice & Palliative Nurses Association and the Pennsylvania Hospice Network. She also was the director of education and research at Forbes Hospice, and later co-authored “Nursing Care of the Terminally Ill,” the first American textbook on hospice care.
She has received numerous national and education honors in recognition of her caring work, including the Hospice & Palliative Nurses Association’s Leading the Way Award, the University of Pittsburgh’s Distinguished Alumni Award and Yale University’s Distinguished Alumnus Award.
The Pierre Salmon Award will be presented to her next month in Palm Springs by Edo Banach, president and CEO of the National Hospice and Palliative Care Organization.