DiSorbo is now executive director of the largest hospice north of Washington, D.C. The Community Hospice, born in 1997, through the merger of St. Peter's Hospice of Albany and Capital District Hospice of Schenectady, is a network of six regional programs covering eight counties, with an annual budget of over $40 million, serving over 600 patients each day. Employees number about 400. “We have a centralized administration for efficiency of scale, but ours are still very locally delivered services, close to home,” he explains.
DiSorbo started his professional life as a social worker, after completing his B.A. and M.A. Studying psychology at Union, he graduated Phi Beta Kappa and summa cum laude, and won both the Catlin Prize and the Lasnik Award. He went on for a master's degree in rehabilitation counseling at the University at Albany. While working at Schenectady Catholic Family and Community Services, he read the fateful want ad for a hospice director. “Schenectady was starting a hospice program, and I'd never heard of it. But I loved the write-up. I never imagined this would be the direction I'd be going in, but it's become my calling.”
DiSorbo was integral to the development of national Hospice Medicare legislation, and once passed, Community Hospice was the first such organization in the country to become Medicare-certified.
He's been president of the state association and active in the national movement. He's proud of the award The Community Hospice received at this year's annual meeting of the national organization, “for work with African Americans and African American churches-a model program.”
Internationally, DiSorbo has worked to form an alliance with three African hospices to assist with the larger global AIDS crisis. He has also helped many other New York State hospices in their efforts to create community-based programs.
Origins
Hospice started as a small revolution on the part of a few nurses, priests, educators, and other community advocates for the dying. The movement has matured to become more integrated into the American healthcare system. It has reached a level of acceptance it never had before.
Initially, people viewed hospice as only a place, only for the elderly, and only for cancer patients. None of that is true today. “Fewer than half our patients are cancer patients,” DiSorbo explains. “We have a lot of younger patients, people with Alzheimer's or renal failure, and so on. Today, one of three people who die because of disease have used hospice.”
The main area of growth has been in nursing homes. “We began collaborating with them in the ‘90s,” says DiSorbo. “Federal law paved the way in 1989. We're in 42 different nursing homes now, working with hundreds of patients. But the vast majority of our work is still done in people's homes-people want to stay at home, want to die at home.”
The interdisciplinary care team
Hospice care covers basic medication, equipment, supplies, and services. The interdisciplinary team serving patients includes a social worker, a bereavement coordinator, a registered nurse, a licensed practical nurse or home health aide, community volunteers, and a spiritual care counselor or chaplain, trained to walk with the patient and his or her family through the end-of-life experience. The patient and the family learn about medical options to provide comfort, empowering them to make informed choices. The team works to address the physical, emotional, social and spiritual needs of the patients, families, and caregivers.
Special programs at The Community Hospice include Charity Care, for those without health insurance; Community Homes, where people who live alone with advanced terminal illness can enter homelike residences; and The Wish Fund, which enables patients to fulfill their final requests.
In meeting the needs of these patients, hospices depend on a large number of trained volunteers who work closely with patients and families, as part of the interdisciplinary care team.
The Community Hospice alone engages over 1,000 volunteers, including a number of Union College faculty, students, and alumni.
Union has been an integral partner from the start, says DiSorb “Capital District Hospice was incorporated here at Union in 1978, in psychology professor Rudy Nydegger's office. [Nydegger still works as a Hospice psychologist.] The New York State Hospice Association was incorporated here at the same time, thanks to the volunteer services of attorney Thomas Hayner.”
The hospice care difference
Hospice comes in not just in the dying hours, but in the months and weeks preceding. Hospice care can make a huge difference in how people experience death -their own or another's. But first, they have to know what hospice is and how it can help.
“There are still many people who don't take advantage of our services or get here till it's late. Often, patients' families tell us, ‘I wish we had known sooner about hospice and what it was like.'”
What accounts for people entering hospice so late in their illnesses? First of all, says DiSorbo, “It has become harder for doctors to give a prognosis of six months to live, which is required to enter hospice care. More advanced, aggressive treatment options are also available today, and people experience lingering resistance to hospice. Finally, there's the insurance climate-Medicare [which reimburses hospices] sometimes finds ways to deny services.”
In fact, though, entering hospice earlier can actually prolong a person's life. So hospices are working to get the word out and to address economic and political issues at the national level and locally, through public education. The National Hospice and Palliative Care Organization has issued guidelines for doctors in determining prognosis and has developed clinical criteria that would demonstrate a patient's readiness for hospice care. Hospices are also working directly with doctors to encourage them to refer patients as soon as they are medically appropriate and let them know that hospice care is available.
DiSorbo's wish for the future? That the hospice movement become truly mainstream. “I'd like to see society's attitudes change even more. Hospice is not just about care giving; we're also social change agents. People can use end of life for personal growth. Before this is common knowledge, we have a long way to go.”
The Union connection
“We have almost always had Union volunteers in The Community Hospice,” says Phil DiSorbo. The Union College community is “quite involved in the local movement,” agrees Sue Koehler, coordinator of volunteer services at the Schenectady Hospice, where she oversees about 150 volunteers. Many Union students have taken the 25-hour volunteer training program. Some go to local nursing homes, and visit with socially isolated people. Pre-med students meet with patients at Ellis Hospital, she says, “in what is almost crisis care, often with people who have just found out they have a terminal illness. So the students are at the front end of what's going on emotionally.
“Two pre-med students-Melissa Perrino ‘06 and Lindsay Forur ‘06-have been taking care of patients at home and at nursing homes. One of their patients was a 96-year-old woman, who was being cared for by her 94-year-old sister. The sisters attributed their longevity to never having eaten anything processed. They had a garden, and made their own pasta sauce. They shared their recipe, as well as crocheting lessons, with Lindsay and Melissa during their weekly visits, allowing the sisters to feel they were passing on a tradition. So it was a real exchange, with listening and affirming their stories being number one.
“Lindsay is also involved in the Wave Riders Program, which provides bereavement support to children. Kelly Herrington ‘96, Associate Dean of Admissions, Michael Kane ‘05, and Sarah-Jo Stimpson ‘05 have also been involved. And Adam Howe ‘05 is still using his car to give patients rides, provide transportation, take a husband to see his wife in a nursing home.”
Carol Weisse, director of Union's Health Profession Program, and biology faculty member Karen Williams worked together to bring training sessions to campus so students, faculty, and staff could get involved in hospice. And Weisse, along with Yellow House colleague and psychology professor Suzie Benack, recently organized a program called “Dying with Dignity,” inviting in hospice volunteers to speak with students about their experiences.
Jean Underwood (wife of Jim Underwood) has been an active volunteer for years too. “Give me your toughest case,” she tells Sue Koehler, who says, “One time, this was a patient living in the same home with her daughter and son, who had serious alcohol and drug abuse problems. Jean was willing to walk into a less-than-safe environment-for herself and the mother. Jean was a remarkable advocate and support for her.” Says Koehler, “The Union connection has been a great one for us.”