YC News

Sock Drawer Letters

Davis Enterprise Article, YC News

Sock Drawer Letters

By: Craig Dresang, CEO, YoloCares

 

 

 

 

 

There is a corner of my sock drawer reserved for timeworn letters that I received from my parents after I left home to find my place in this big crazy world. I occasionally take them out to reflect on the encouragement and love captured on the now yellowed pages. Recently, for the first time in decades, I added a letter to my stash.

 

This past month, I had the profound privilege of being with and embracing the board president who hired me 11 years ago as he said his farewells and took his last breath. He was surrounded by an adoring family and a few close friends in his Davis home.

 

Tom Frankel, former YoloCares board president, patient-care volunteer and philanthropist, was the guy who convinced my husband, Joey, and me to move from Chicago to Northern California. Although, truth be told, we did not need much convincing.

The first time I met Tom in person was during the Fourth of July weekend in 2014 at YoloCares’ campus on Galileo Court. It was 108 degrees. I arrived in Chicago style . . . dark wool suit, starched white shirt, my grandfather’s ruby cufflinks, red tie, and wingtip shoes. Tom, who was president of the board, walked into the conference room wearing wrinkled shorts, a tee-shirt and sandals. I was jolted by the fact that I could see his bare toes. “Welcome to northern California Craig,” he said. “If this works out, you might want to reconsider your wardrobe.”

I had a day-long series of interviews with the crew from YoloCares (then Yolo Hospice). It involved a two-hour grilling session with the entire 16-member board followed by a group interview with 40 employees and then lunch at Bistro 33 in downtown Davis.

 

What followed from that day was a decade-long adventure that neither of us could have imagined. It was an unfolding of events and circumstances that would challenge us personally and professionally. It was a journey that tied us together, stretched us, and changed us for the better, and for the rest of our lives.

 

From the first day Tom walked into my life until his last day here, he believed in me . . . in the same way my parents did. There were times that we had some painful and scary decisions to make. He would always ask questions and challenge me the same way a good attorney would. His job, he told me, “Is to play devil’s advocate and make sure you, and we, are thinking of every possible angle.” Afterwards, he would tell me that he supported my judgement, my counsel, my decisions. He trusted that I would never make big decisions without his and the board’s full knowledge and support.

 

The attorney in Tom was never comfortable moving forward with a decision unless he had all the facts, and he knew, beyond a shadow of doubt, that it was the best decision for the agency. He quickly saw that same quality in me too. We shared an identical commitment to protect, and make better, this community-birthed, community-owned, and community-governed treasure. When we had to carry blame or sport a few black eyes (figuratively speaking), it did not matter. What mattered was honoring the organization’s founding vision and securing the future of YoloCares, not for our benefit, but for the benefit of the communities that gave it life. Tom understood, as I did, that we are temporary stewards of something bigger than any of us, and of something that, if we get it right, will outlive both of us . . . and will benefit generations of families who we will never know.

 

Under Tom’s leadership on the YoloCares board, the agency secured Joint Commission accreditation, launched one of the State’s first community-based palliative care programs becoming the first of its kind to achieve Joint Commission certification in Northern California, and secured its first million-dollar grant from the Yocha Dehe Wintun Nation to better understand and address the barriers to end-of-life care for rural and indigenous people.

 

Under his watch the agency first became a nationally ranked Best Place to Work, merged with Citizens Who Care, opened Galileo Place (Davis’s first adult day program), and began the years-long process of assuming ownership and operations of Joshua’s House (the West Coast’s first hospice home for otherwise unhoused individuals). With his support and co-piloting, YoloCares’ quality scores soared and the agency more than tripled in size and reach. Today, partially because of his decades-long commitment, YoloCares’ quality scores are in the top five percent of all 1,700 hospices in California.

 

This is the power that a good board president and board leader can unleash. Tom was my boss, my mentor, and my California dad. Yet, it would be untruthful to say we never had our bumpy moments and disagreements. But we always worked through them with transparency and with an understanding that sticking together through the worst of storms will strengthen both us and the agency.

 

I try to instill an important leadership principle with my team: Be friendly with people who report to you or who you report to, but do not become close friends. Blurring those professional boundaries between a leader and their team can only lead to dysfunction and possible trouble. Partially, because there will always be an imbalance of power so the relationship will never be equal.

 

That leadership principle caused me to uphold certain boundaries with Tom. Only when he retired from the board, did I feel comfortable fully embracing his friendship. His departure from the organization’s board cleared the path for a deep, meaningful and equal relationship. When his health declined and he needed YoloCares as a healthcare provider, I signed up to be Tom’s palliative care and hospice volunteer. He became my patient but always remained my mentor. I believe that I benefited more from our weekly visits than he did. He was always gracious and generous, and loving in a very fatherly way.

 

Four days after Tom died, I received a letter in the mail from him. It starts out by saying, “Craig, when you receive this letter, I will be deceased.” And the next two-and-a-half pages are filled with gratitude, words of support, and an affirmation of our special relationship. The only other person who has written letters like this to me was my own father. I have a short stack of them, now decades old, in my sock drawer. Tom’s letter is now on top.

Need good care? Buyer beware!

YC News

Need good care? Buyer beware!

By: Craig Dresang, CEO, YoloCares

 

Admittedly, I can sound like a broken record on the issue of nonprofit versus for-profit hospice care.  But my needle is stuck in this groove for good reason.  Mostly because State lawmakers have let down their founding hospice providers . . .  the ones that grew out of the Civil Rights Movement, gave birth to end-of-life care in the Golden State, and remain California’s safety-net.

 

My senior leadership team and I just returned from the National Partnership for Healthcare & Hospice Innovation’s annual conference where we learned that the number of hospice providers in California has now swelled to 1,700 . . . nearly all are set up as profit-seeking enterprises.  It is also predicted that a large number of them may disappear in another three to seven years.

 

Compare California’s roster of seventeen hundred hospice providers to a state like Florida where there are only 48.  The Sunshine State boasts a population of 5 million seniors (21 percent of the population), while the Golden State has 6 million seniors (15 percent of the population). The proliferation of providers has been more pronounced in states that do not have Certificate of Need (CON) laws. States with CON programs, like Florida, regulate the number of hospices allowed in an area.  Without such laws consumers are often preyed upon at their time of greatest need by bad actors.

 

In California, the for-profit hospice industry is explosive. While some would argue that growth and the resulting competition is healthy, the average consumer is usually not aware of the quality divide that may separate one hospice from another.  Simply put, California lawmakers have botched the end-of-life care industry, but more importantly, they have failed the patients, families, and communities who need really good care and in-place safety nets for their most vulnerable residents.

 

Granted, a few years ago the California governor placed a temporary moratorium on the issuing of new hospice licenses to slow down the explosive growth.  But it was too little too late.  Many smart and ambitious venture capital investors bought up scores of licenses before the moratorium and they have continued the cycle of open, sell, repeat.  It is ironic that a highly regulated state like California where it is illegal to whistle for a lost canary before 7 a.m. (in Berkeley), it is perfectly legal for modern-day snake oil salesmen to open a hospice and keep it running with no reported quality scores.  Lawmakers need to stop majoring in the minors and start majoring in what matters most to people who need care.

 

Nearly 50 years ago, when grass-roots physicians and clinicians formed YoloCares, they never imagined a future where nearly 2,000 other hospice companies would enter the California market.  From privately owned mom-and-pop shops to multi-billion dollar publicly traded corporations, many hospices simply seek to profit from patients during the most vulnerable time of their lives . . .  usually at the expense of quality-of-care.

 

Some entrepreneurs enter the hospice industry to build a nest egg for early retirement.  Others wish to line the pockets of shareholders, owners, and investors.  In fact, a former nonprofit nurse was recently wooed into a business deal, perhaps by the same guy who has already opened, then sold or closed hospices, under a variety of names, in Sacramento.  Although the owner’s standing for delivering sustainable high-quality care is sketchy, he may have a solid reputation for building wealth.

 

This same nurse told our chief clinical officer, “I have been approached by someone who wants me to become an owner of a new hospice company.  My primary role will be to build a census of 40-45 patients and then we’ll sell it.  I’m told I will make millions of dollars.”  She also revealed that she was recruited because of her relationships with other care facilities . . .  nursing homes, and retirement/assisted-living communities.  This person, who had less than a year of hospice experience, and is not a certified hospice and palliative nurse, has branded herself as a hospice guru on social media. Her agency does not state accreditation.  Nor does it show any publicly reported quality scores.

 

The for-profit formula is simple.  High caseloads for clinicians + High pressure + Barebones patient/family support = 20 percent profit margins for owners and investors.  Unfortunately, there are many new market players that lack integrity and employ a business model where they only meet the minimum threshold of hospice requirements.

 

A recent LA Times investigation reported a correlation between the rapid growth of hospice companies and a wave of fraud and, in some cases, inadequate care for those in their final days of life.  The report described a one-mile stretch of Victory Boulevard in the San Fernando Valley where there are more than two dozen hospices in one office complex alone.  Some of those hospice operators were cited for sending recruiters to places like senior centers to recruit patients by offering them free medical equipment, housecleaning services, or other things of value.  The piece highlighted a “cottage industry” of kickbacks and deceptive practices.

 

At its core, the most fundamental reason for our nation’s embrace of the hospice model was to foster a more humane world and to clear the way for a gentler, less tumultuous crossing for the sickest among us. Madalon Amenta, co-founder of the Hospice & Palliative Nurses Association and co-author of Nursing Care of the Terminally Ill, has said, “Hospice care evolved from a basic moral instinct of caring for your neighbor who is suffering. Throughout history it has always been a simple human response to a real human need.”  Until her recent passing, Amenta was also a board member for YoloCares.

The spiritual principles that have been the bedrock of hospice can be at odds with contemporary transactional culture. Amenta, reflecting on her role in getting the Medicare Hospice Benefit passed in Congress, says, “American venture capitalists quickly figured out how to monetize a model of care that was previously designed to be benevolent and charitable at its core.”  Patients can receive exceptional high-quality care in either commercial or community-grounded programs; they can also receive poor care in either type of organization. While there should be no moral judgment about a hospice provider’s tax status, it is important to understand the tensions that exist within the industry and the wide range of differences related to practice and philosophy of care.

In recent years, Health News Florida reported that, “According to the Medicare Payment Advisory Commission, for-profit hospices had Medicare profit margins of 19 percent compared with 0-6 percent for nonprofit hospices.”   There are real and perceived fears that if profitability becomes a focus, then quality can take a back seat.  According to a 2022 article in Fortune, “The ability to turn a quick profit in caring for people in their last days of life is attracting a new breed of hospice owners: private equity firms.  That rapid growth has many hospice veterans worried that the original hospice vision may be fading, as those capital investment companies’ demand for return on investment, and the debt load they force hospices to bear, are hurting patients and their families.”

 

In the same article, Dr. Joan Teno, an adjunct professor at Brown University School of Public Health, said, “Many of these transactions are driven by the motive of a quick profit.  I’m very concerned that you’re harming not only the dying patient, but the family whose memory will be of a loved one suffering because they didn’t get adequate care.”

 

California does not need greater scrutiny of its legacy nonprofit safety-net providers.  The state needs to put newcomers under a magnifying glass and consider revoking hundreds of hospice licenses, especially for providers that are not accredited and do not post quality scores.

 

And each of us, as citizens of our state and as human beings, deserve compassionate and high-quality care when we or someone we love is dying.  Our families deserve better care.  Our lawmakers and policy shapers must do better to ensure this kind of care is available to all of us, and that bad actors, more concerned about their wealth and retirement funds, don’t have a way to prey on any of us when we find ourselves in a life and death crisis.

YoloCares awarded $110,000 grant for children’s grief

YC News

YoloCares awarded $110,000 grant for children’s grief

April 2, 2025 — YoloCares has been awarded a highly competitive, three-year $110,000 Grief Reach Grant from the New York Life Foundation, the National Alliance for Children’s Grief, and Changemakers to expand YoloCares for Kids’ grief programs.

Namely, the grant will fund the Peer2Peer grief support groups, a program designed to guide children and teens coping with the loss of a loved one. The Peer2Peer program pairs teens with younger children in a multi-generational buddy system, breaking down the typical barriers that often hinder grief support for these age groups. This approach to peer support will serve children as young as three and be open to teens of all ages, offering an inclusive and comprehensive support network.

In addition to Peer2Peer, YoloCares for Kids will introduce a dedicated grief support program for youth transitioning out of the foster care system. This program will use virtual meetings, social media platforms, and in-person social events to provide crucial support and connection. Transportation assistance will also be available to ensure that young people navigating life after foster care are able to access the resources they need.

As part of the grant, Year One will focus on partnering with Changemakers to enhance program evaluation tools and processes for YoloCares for Kids. This partnership will not only strengthen the effectiveness of the Peer2Peer and foster youth programs but will also serve as a roadmap for all YoloCares’ programs to improve impact assessment and measurement.

The Grief Reach Grant is awarded twice a year to only a handful of the country’s most high-impact, innovative children’s grief programs. Out of hundreds of applicants—often over 100 per cycle—YoloCares was selected for its reach, impact, and the unique structure of its Peer2Peer program.

“The highly competitive nature of the Grief Reach Grant highlights the significance of this achievement for YoloCares and the stellar vision of Elisa Stone, the program’s creator,“ says Chris Erdman, Director of the Center for Loss & Hope (CLH). “Our goal is to be national leaders in grief support by offering the most innovative programs to our community. This award will allow us to expand our vision and our reach.”

The Grief Reach Grant is one of the nation’s most prestigious awards in the field of children’s grief, and receiving it places YoloCares for Kids among the top grief programs in the country. This support will allow YoloCares to continue to expand its mission and offer life-changing resources for children, teens, and young adults experiencing the profound impact of loss.

Breaking Barriers in Medicine: Advancing DEI

YC News

Breaking Barriers in Medicine: Advancing DEI

By: Craig Dresang, CEO, YoloCares

She is unassuming.  She is a powerhouse.  Her broad blissful smile can be disarming, but make no mistake, Jackie Clark RN, MBA, is a force of nature who knows how to get things done and how to lift people up in the process.

The woman who California appointed as its first CEO for Correctional Healthcare Services, and now serves as the Board Chair for YoloCares, has some insight about the emerging challenges facing both healthcare and the country.

Before her recent retirement, Clark oversaw the care of approximately 5,000 incarcerated patients annually, including one of the only hospice facilities in the country for incarcerated individuals. Clark expanded hospice care and developed a program for patients with Alzheimer’s and dementia. Recognizing the emotional impacts that an inmate’s death can have in the prison community, she also expanded an existing peer support training program to include preparing volunteers to aid hospice patients.

Clark has worked across four decades to increase access to high-quality care for Americans regardless of their station in life.  When she first assumed her top leadership role, Los Angeles County was embroiled in a lawsuit for not providing adequate care for the homeless and prison populations.  Her assessment of the root causes revealed three big hurdles she would have to address: An archaic care delivery model that was not team-based or interdisciplinary, a 90 percent vacancy rate for physicians, and a lack of professional standards for healthcare workers.  “At the time, the State only hired physicians who had significant violations against their license,” she says.  “These doctors were not allowed to practice medicine on anyone except prisoners.  We cleaned that up right away.”

She continues, “For the first time, we started paying highly competitive salaries. That made a difference in the caliber of clinical staff we could attract.”  In addition, Clark developed a partnership with the University of California-San Francisco’s School of Medicine.  “As a result, we made San Quentin a clinical rotation site for nurse practitioners and physicians.  Then, if they decided to work at San Quentin, we would pay off their student loans.  Because of that, we retained a team of brilliant physicians.”

Over time, Clark completely transformed the quality and delivery of healthcare in all of California’s 34 correctional facilities.  “I introduced a team-based approach to look at each patient in their totality,” she says.  For example, a psychiatric nurse, a clinical nurse, and a social worker would manage someone’s care together as a team with a physician, instead of working separately in silos.  The outcome was better, more coordinated, care.

Under her watch, mobile clinics were created to go into Skid Row.  Many people in the neighborhood would be arrested and booked into jail for loitering.  Often, they were not criminals, just homeless with nowhere to go.  Clark says, “Once in jail, we found out they were mentally ill, dealing with drug addiction, diabetic, or unhoused.  We had no place to house these people, so the system jailed and failed them.  It was a waste of resources and not very humane.  It did nothing to help the individual.  I always thought that if we could partner with the community and introduce mobile clinics then we could keep some folks out of jail.”  The challenge, she explains, “Was a population that no one knew about.  They were considered a throwaway community.  I always believed that if not for the grace of God, I could be one of them.  I saw them as my people, and I wanted to show up for them.  If it was me or one of my siblings, I would want access to basic treatment.” 

If Clark could change anything about healthcare on a national level it would be to provide equal access.  “The most resourced country on the planet still has a tiered system,” she says.  “If you are lucky enough to be wealthy or to have the right job with insurance then you have access to healthcare.  And now, it seems that our country is going backwards instead of moving forward.  I’m not convinced that the new administration understands or really cares about the delivery of high-quality healthcare for every American.  The national agenda is not aligned with compassion and care for the less fortunate.  It’s disheartening,” according to Clark.

She continues, “The country has become numb to things that used to be unacceptable.  You can no longer be comfortable being different.  People thought the Holocaust couldn’t happen, but it did.”  In every corner of American industry, and especially in healthcare, Clark says, “We should want the best and the brightest which does not necessarily mean the whitest.”

When describing her experience as a black female healthcare executive, Clark has always felt that she had to be better than her white counterparts.  “I never wanted to give someone a reason to say that I got a certain position because I am black or am a woman,” she explains.  “I put a lot of pressure on myself to be the best.  In the end, it paid off because that allowed me to promote into other positions.”

The federal government’s move away from Diversity, Equity and Inclusion (DEI) and Affirmative Action, is deeply troubling to Clark.  Contrary to some common beliefs, there are no hiring quotas attached to Affirmative Action or DEI. Historically, Congress has, in a bipartisan fashion, created federal procurement programs to counter the effects of discrimination that have raised artificial barriers for businesses owned by disadvantaged individuals, including women and minorities. Clark says, “Affirmative Action simply gave me, and others, a seat at the interview table.  It afforded me the opportunity to show what I could bring to a position.  That’s it.  The rest was on me.”  In 2024, only 9.2 percent of Fortune 1000 CEOs were women.  Women and people of color are still underrepresented in roles that lead to CEO positions.

Like watering a garden with Miracle-Gro, “Diversity grows us as humans.  It expands our learning and understanding of the world,” says Clark.  “It broadens our knowledge and perspectives.  Instead of being fearful, we should embrace it.”  Multiple studies, particularly from McKinsey & Company, demonstrate the significant value of diversity in the workplace. Companies with higher levels of gender and ethnic diversity tend to outperform their peers financially.  In addition, companies with diverse teams show improved innovation, decision-making, and market capture abilities. Companies in the top quartile for diversity are more likely to have superior financial returns compared to those with lower diversity levels. 

Serving two separate terms on the YoloCares Board since 2014, Clark says her service is a way she can use her background as a woman, a nurse, and a healthcare administrator to strengthen her community.  Her advice to other young women of color: “Your journey is going to be hard, but it will be worth the end goal.  No matter what hurdles or pitfalls you encounter, just brush yourself off, stand up, and keep going.”

Her counsel for a nearly 50-year-old YoloCares is the same: “We must keep doing what we are doing.  We hire the best and brightest, regardless of color, race, gender, sexual orientation or anything else.  Without a commitment to DEI, the best and the brightest may not always get a seat at the table because they are not white.  YoloCares wants to ensure that they always do.  We cannot lower our standards. This is what makes us an employer of choice and it is what makes our care world class.”

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NOTE: Jackie Clark lives in Davis with her husband and son.  She is one of 11 children and describes her youth as, “growing up poor” in Oxnard, CA.  She says, “My dad was a day laborer who always emphasized education as a way to improve your life.”  Working fulltime while going to school, Clark began her career as a certified nursing assistant (CNA), who later became a registered nurse (RN) and then achieved an MBA. Regarding her work at YoloCares, she says, “I hope to lean on my background in quality improvement, healthcare policy, change management and government relations to help YoloCares cement its position as a national leader in end-of-life care.”  If she had a second career, she says, “I am a dog person.  I would open a dog rescue and employ otherwise homeless people to run it.”

It’s love’s illusions that we recall

YC News

It’s love’s illusions that we recall

 By: Craig Dresang, CEO, YoloCares

The holidays can be complicated.  They carry mixed emotions for nearly everyone.  This is especially true for the 300 YoloCares families enrolled in hospice or palliative care this season.  Many people look forward to being together with family while simultaneously trying to forget past affronts . . .  including the trivial disagreements, political arguments, inebriated insults, and painful debacles of the past.

The seasonal selective memory that carefully edits out ancient sins blankets the country in December.  It is a time to set aside squabbles and share meaningful family stories and rituals.  It is in that spirit, that I share a personal reflection and family story, called “It’s love’s illusions that we recall” during our shared season of human kindness and connection. 

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Something weird happens when someone you love dies. Your memory of them becomes selective and more refined. If love, in its purest form, is present in a relationship — even a dysfunctional and imperfect one — then the bruises and burns of that relationship have a way of becoming muted.  The love and goodness of that bond become clearer. Memories become ever present as a source of comfort, inspiration and nostalgia. A longing and appreciation for what was takes on a new dimension. Perhaps this is why people around the globe, and through the ages, have come to believe that love is the only thing that transcends time and space.

Uma, the mother goddess who is central in Hinduism, teaches that love is a basic component of divine nature, and the very thread that unites all beings and permeates the universe as we know it. The Apostle Paul, in the Bible’s First Epistle to the Corinthians, said the three things that will last forever are faith, hope and love. “And the greatest of these is love,” he concludes.

The human race did not invent this indefinable, and in some ways not fully expressible, thing called love. To some extent our understanding of love’s source and its power remains a mystery. We know love when we see it and experience it, but we are unable to adequately define it. As the character Dr. Amelia Brand says in the 2014 science fiction film, Interstellar, perhaps love “means something more, something we can’t yet understand. Maybe it’s some evidence, some artifact of a higher dimension that we cannot consciously perceive.” Nothing of great value comes easily. To preserve our relationships, we must often pass through many difficulties and hardships. As we do, it is the presence and power of love that carries us through.

So my recollections of loved ones are overshadowed, not by disagreements and disappointments (and there may have been many), but by the richness of our connection, acts of selflessness, and our belief in each other.

It has been 30 years since my maternal grandmother, Hazel, died. Even so, her razor-sharp wit, clever sense of humor, and craft of storytelling are part of my life every day. She had a way of being funny without realizing the potency and brilliance of her own rare strain of humor. Some memories with Grandma Hazel will never leave me. In fact, they serve as a refuge and help me reconnect with who I have always been.

During one dreadfully hot and humid July, the two of us spent an entire weekend hacking down six-foot-tall weeds that had overtaken an abandoned chicken coop on the country property that she and my grandfather had just purchased outside of Fox Lake, Wisconsin. They wanted to grow a garden in its place, so we used machetes and muscle to reclaim a 15×40-foot patch of ground in order to grow tomatoes, potatoes, pumpkins, and onions. Once the hard labor was done, we carried our fishing poles to the end of the road where it disappeared into a vast lake. Hazel loved bullheads so we cast our lines in just the right spot, where the railroad tracks bridged over a narrow harbor, to reel in enough fish for dinner.

When we got back to the house from fishing, my grandfather asked Hazel for the car keys. She said, “Just a minute, Fran. My hands are dirty.” After washing fish slime and bait off her hands she reached into the top of her blouse, between her bosom, and pulled out her pack of cigarettes, a lighter, her checkbook, and then the car keys. “Oh, here they are,” she said. “Here you go.” It was a standing family joke that no one could pack a bra like grandma.

When it was time for bed that evening, I was in too much pain to fall asleep. I had spent most of the day shirtless as we worked to remove small trees and thick weeds with woody stalks from the old chicken coop. As a result, my back was severely sunburned, and I could hardly lay still. My grandmother came to the rescue with a homemade cooling lotion that helped soothe the redness and blisters on my back. I laid flat on my stomach while she gently rubbed her concoction into my skin. As she did, she retold the stories of our day and talked about all the fish we caught. For the first time I noticed her hands. They were gentle, but spotted and weathered by years and experiences that I will never know. As they tenderly moved across my back, I could not help but think that these were the same hands that tucked my mom into bed when she was a girl. I could hear the muffled sounds of a polka band coming from the television in the living room where my grandfather was watching the Lawrence Welk Show. The warmth of grandma’s voice began to trail off as I slipped into a deep sleep. Only a few times in my life have I felt as loved and grounded as I did that weekend at my grandparents’ house.

Since then, I have come to believe that love is so much more than emotion or feeling. It is an indescribable energy or power that can move a person to give a dollar to a homeless man panning for money at a stop light, rescue a drowning honeybee from a swimming pool, donate a kidney to someone who needs a second chance at life, or soothe a sunburn with a homespun potion and a tender hand. Hope, gratitude, bravery, forgiveness, kindness, and generosity all sprout and grow from ground that has been cultivated and irrigated with love. Clearly, humanity’s best traits show up where the soil is nutrient rich with this mysterious connection. And still, for all that we do know and understand about love, there will always be much more that we just do not know and may never understand.

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

YC News

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.