At 96, a hospice pioneer received the care she helped create

At 96, a hospice pioneer received the care she helped create

 By: Craig Dresang, CEO, YoloCares

Our agency, community, and nation said farewell last week to one of the first genuine friends I made here in California (11 years ago).  Madalon Amenta, 96, an early pioneer in the hospice movement died peacefully just after midnight on Feb. 26 while receiving the kind of care that she helped create more than 40 years ago.

In 2014, Madalon had just moved to Davis from Pennsylvania while my husband Joey and I were still catching our breath after transitioning from Chicago.  Out of the blue, Madalon who was 85 at the time, called me at work and said, “You don’t know me, but I’m an old, old lady with a lot of professional hospice experience, and I would like to get involved in your organization. I understand we’re both newbies from the east so we should meet. What’s a good time for you?”

The next week we had lunch together in downtown Davis and immediately bonded. From the get-go it was clear that Madalon, the daughter of an Irishman and Jewish woman, was wicked smart, whimsical, charming and cheeky.  Two days later, she invited me into her home which was filled with spectacular art and lots of photos — some framed and hanging on the wall and some tucked away — of her with former President George H. W. Bush and First Lady Barbara Bush, the Clintons, the Obamas, and many other industry leaders. We drank tea, shared stories, and laughed.  Madalon could be funny without realizing it. Except for my husband of 22 years, she was the only person who could make me belly laugh. I’m grateful that our organization had the privilege of caring for her and her family during this past year. It was our great honor.

Her contributions mattered and they were many.  Ultimately, her work shaped an industry — or as she would often say — “Our shared ministry.”  Below is a summary of the part she played in the American Hospice Movement.

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As an early American voice in the hospice movement, Madalon Amenta served as a founder of both the National Hospice & Palliative Nurses Association (NPNA) and the Pennsylvania Hospice Network. She was also 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 received numerous national and education honors in recognition of her caring work, including HPNA’s Leading the Way Award, the University of Pittsburgh’s Distinguished Alumni Award, and Yale University’s Distinguished Alumnus Award. In 2017, the California Hospice & Palliative Care Association honored her with their highest distinction, The Pierre Salmon Award, which was presented to her in Palm Springs by Edo Banach, then president and CEO of the National Hospice and Palliative Care 

Organization. I accompanied Madalon on that trip and saw first-hand how powerful she could be standing behind a microphone and podium.

After moving to Davis in 2014, Amenta reached out to YoloCares to become a volunteer. Her enthusiasm for volunteer work quickly morphed into a leadership role where she served as a seasoned and valued member of the Board of Directors until her death. She was a key participant in the organization’s palliative care advisory council where she helped build a new and highly innovation model of care . . . the first of its kind in Northern California to achieve Joint Commission Accreditation. Her wisdom, 

enthusiasm, and insight helped transform YoloCares’ palliative care program from a tiny pilot with just two patients to a comprehensive accredited program with an average daily census of 180.

In her role as YoloCares volunteer, she served as a community educator, hospice ambassador, advocate and facilitator for advance care planning, mentor for hospice clinicians, and a meaningful voice for the future of end-of-life care.

Not too many decades ago quality standards for hospice care did not exist. Clinicians had no national criteria and no official 

guidelines to follow. Frustrated by this reality, four California nurses (including YoloCares’ former executive director, Virginia Shubert RN) locked arms to work on what would become the country’s first set of quality assurance manuals used across the country. When they finished cobbling together a comprehensive set of standards, they handed their material over to Amenta.

She took the work of these four nurses, spread it out on her dining room table, and 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 chuckled, “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,” according to Amenta. “It didn’t deal with the meaning of illness or the consequences of treatment. It needed to be reformed,” she explained. “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 hospice nurses to be significantly more imaginative, assertive, forthright, free-thinking and independent than their colleagues, who s

cored lower than the norms. Amenta says, “It shows that it takes a special kind of person to work in hospice.”

Amenta’s earliest inclinations were artistic. In her youth, she fancied herself as an actor, poet, and writer. However, she said, “My forays into those fields never even began to pay the bills, so I decided to become a nurse.” 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 spiritu

al dimension, the source of love and caring.  She said, “According to Saint John, ‘work is love,’ and according to Khalil Gibran, ‘work is love made visible,’ and according to me, hospice work is love made operational.”

Her brief time with us will forever represent 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 YoloCares board member. But Amenta, a lover of life, has been all these things and more.