“President Carter is in Hospice.”
When that headline broke, most people assumed Jimmy Carter was on the verge of death. Today, a year later, America’s 39th president remains under Hospice care- not unlike the 100-plus individuals currently cared for by Hospice of Ukiah’s multidisciplinary team.
For over 40 years, the non-profit organization founded by the late Dr. Robert Werra has embraced the guiding principles of the originator of the Hospice model, Dame Cicily Saunders.
“Back then, patients who could no longer be cured were placed at the end of long wards,” Werra explained in an interview prior to his passing. “We doctors, hospitals and nurses were good at diagnosing and treating conditions. But none of us were trained on what to do when you can’t cure someone. Cicily thought, maybe those patients don’t need to be in a hospital at all,” Dr. Werra continued.
Saunders was a hospital nurse in the 1960’s and was deeply affected by the plight of dying patients. She returned to medical school, becoming a physician and enlisting the help of other physicians, chaplains and support staff, converting a building to a homelike environment, including beds for family members wishing to stay near their loved ones.
The word “hospice” harkens back to the time when Medieval pilgrims sought places of refuge and hospitality along their pilgrimage route. Saunders coined the term because a hospice becomes a refuge for those on their “final pilgrimage.”
Saunder’s vision and Elisabeth Kübler-Ross’ landmark work on death and dying became the foundational principles for the Hospice movement. It didn’t take long for Hospice organizations to become established worldwide.
Once established in the US, the management of hospice care was quickly appropriated by private health insurance companies and Medicare. Today, there are about 5,000 non-profit and for-profit Medicare-affiliated hospices throughout the United States. Hospice of Ukiah is one of only two agencies providing hospice services in Mendocino County. Its uniqueness is that per Dr. Werra’s mandate, the organization offers services to everyone- free of charge, because of their foundational decision to eschew Medicare funding.
Medicare-affiliated hospice programs require patients work with Medicare-assigned physicians. Additionally, patients must forego all life-extending treatments. “Those are the rules set up by Medicare and insurance companies. That’s why Dr. Werra didn’t pursue a contract with Medicare. He knew that families need our type of team support, and he didn’t want to abandon them,” says Executive director Janet Denninger. “We’ve treated people in tents, hotel rooms and in the finest homes in the county. We care for everyone- from the very old to the very young.”
To qualify for Medicare-funded hospice services, a patient’s life expectancy must be limited to about six months. Hospice of Ukiah has no limits to how long patients can receive care.
“A cancer patient undergoing potentially lifesaving chemo or radiation therapy in hopes of a cure cannot be served through Medicare hospices. We accept patients undergoing chemo,” Denninger continues.
Another contrast between Hospice of Ukiah and Medicare-affiliated programs is the ability to maintain relationships between the patient and their primary care physician.
“We work with the patient’s physician. Your physician continues to treat you, and our nurse and team become extra eyes and ears in the patient’s home,” Denninger continues. The program provides access to a nurse, social worker, personal care assistants, counselors and respite volunteers.
According to the National Institute of Health, more than 50 percent of health care dollars are spent by 5 percent of the most gravely ill Americans. And most of those costs are incurred in hospitals, during the last year of life, despite the fact that nearly 50% of surveyed Americans state they would prefer to die at home. In 2021, 1.7 million Medicare beneficiaries were enrolled in Hospice- at a taxpayer cost of $23.1 billion, according to the federal Medicare Payment Advisory Commission. Almost half of Medicare patients who died that year did so under hospice care. Denninger notes that Hospice of Ukiah did not add one dollar to that taxpayer burden.
Janet Denninger began working with Hospice of Ukiah in 2012 as the organization’s office manager. She worked closely with Dr. Werra and was promoted to Executive Director. “I signed up with the Community Foundation’s Executive Director Leadership program and graduated in May of 2023,” she notes. Denninger and the Board of Directors has been working with Jim Mayfield, who is acting in a voluntary capacity to help shape a succession process following Denninger’s announcement that she is retiring.
“My personal experience with Hospice, and my professional experience working with Janet through the Community Foundation led me to accept her request to help the Board select an excellent candidate to replace Janet. I cannot imagine a more mission-driven organization than Hospice of Ukiah. There is no other agency like Hospice in Mendocino County, and I am excited to see where their new leadership will take them,” says Mayfield.
“At almost 80, I feel the need to spend time in my garden, acting, singing, cooking, reading and travelling. I will be leaving this job, which I love, and hope my successor will learn to appreciate the job as much as I have,” she explains.
During Denninger’s time at Hospice, the program expanded to include palliative care services, which offers serious, but not terminally ill patients hospice-type care. Patient Services Coordinator Diane Hunt notes that staff treat palliative care patients with Alzheimer’s and dementia, Parkinson’s Disease, congestive heart failure, diabetes in conjunction with other conditions, cancer, COPD, stroke, cardiomyopathy, ALS and multiple sclerosis in the later stages.
Patients enrolled in the palliative care program can easily transition to Hospice services, when and if they are needed.
“It’s nice for families to have this transition. People may start off with a chronic condition, but then they may die of something else. We had a patient who came to us with renal failure. Then she fractured her hip. We follow people where they are- at home or in an extended care facility,” Denninger notes, adding that the addition of the Palliative Care Program took place with no increases in revenue.
“It’s helpful to know a patient for a while,” says Hunt. It’s not unusual for Hospice to be contacted only days or hours prior to a person’s death. “We can offer so much more to families if they don’t wait until the final hours,” Hunt continues.
Another advantage of Hospice’s program is that by not becoming a Medicare-certified program, they have much more leeway in the length of time they can serve patients.
“We have no limit on the amount of time we can support people. We have patients we have been supporting for years,” says Hunt. Plus, she notes patients have the ability to call their Hospice nurse at any time, with any questions.
The geographic range of Hospice has increased, with staff serving patients in Ukiah, Potter Valley, Redwood Valley and Willits. Most recently, a full-service program in Anderson Valley was launched in 2023. Susan Bridge-Mount is a board member who was instrumental in bringing Hospice of Ukiah to Boonville and beyond. “Dr. Mark Apfel and Judy Nelson had been providing limited hospice care in our area, but are now part of the Hospice of Ukiah team,” says Bridge-Mount. “The Anderson Valley community stepped up and raised funds to support the hiring of staff, which is incredible,” says Denninger.
Dr. Werra and his board made the decision early on that the organization would be community funded. But with a larger aging population and more people living longer, there may be a future where Hospice to have to turn down patients due to funding issues.
“One hundred percent of our financial resources come from our community,” notes Denninger, adding that the agency is grateful for those who choose to include Hospice of Ukiah in their estate planning.
“Donations and bequests have kept our doors open. Without these testamentary gifts and the investments received from them, we could not have continued to serve our community for four decades.”
A significant portion of the organization’s budget is also derived by sales at their store- Hospice Thrift and Gift, located in downtown Ukiah. But the combination of high rent, more people choosing to resell rather than donate items and a declining number of thrift store volunteers is affecting the shop’s bottom line.
“In addition to all of the necessary skills it takes to run Hospice, we are looking for a new director who is excited to tackle the challenges and opportunities of being a non-profit organization that operates a retail store. Janet has done a terrific job at managing our financial resources,” says Davis. “There is a lot of room for creativity in this position because Janet has helped the Board make wise decisions in the fiscal department.”
“Plainly speaking, we’re going to need more cash and more volunteers to successfully serve a growing patient population,” says Denninger.
The use of volunteers was an integral part of Dr. Werra’s primary vision for Hospice. Hospice. Volunteers must pass background checks and complete extensive training, which covers medical issues, bereavement, communication and listening skills, specific training on Alzheimer’s and dementia, family and societal issues, home safety and the “business” aspects of dying such as planning funerals. Some aspects of the training are accessible via video.
“Volunteers become an integral part of our team. We ask them to keep notes and coordinate with the rest of us,” Hunt explains. Volunteers may set their own schedules. Some provide respite so caregivers can take in a movie or shop. Others visit patients who are alone in a skilled nursing facility- a caring, friendly face to let them know they’re not alone.
Davis sees a future where Hospice continues to build upon Dr. Werra’s original dream.
“Staff would love to see us operate a brick-and-mortar hospice facility. We have recently accepted applications for new board members and we’re very excited about their skill sets and enthusiasm. There has been discussion about offering End of Life Planning and other types of community trainings, working more closely with death and dying groups and focusing more intently on Alzheimer’s and Dementia. We’re excited to see who throws their hat into the ring and the mix of skills our new director brings to the table. Continuing in Janet’s footsteps, demonstrating a solid track record of fund acquisition and development will be a critical part of their position,” says Davis, who noted that the position has been posted on Indeed, and invites all interested persons to apply.
Denninger plans to stay on to assist the incoming director with the transition. She is candid about the impact Hospice has made on her life.
“Dr. Werra and I, through the years and despite many disagreements, became a cohesive. working team. I came to understand his vision of a free and unrestricted Hospice and its value to the community. Despite paying our staff what we can afford, they work with immense compassion and dedication. How could I not be proud of the love and support we give to so many in the community?”
“This is your Hospice,” says Denninger. I would like this Hospice to be here for me and my loved ones when I’m ready to go.”
