Phil Di Sorbo ’71 helps to set up hospice care for AIDS patients in sub-Saharan Africa
Phil Di Sorbo will long remember his 1999 visit to Africa, where he saw scores of people without pain medication suffering through the late-stage symptoms of AIDS.
“Nobody should be in that condition on this planet today,” he recalled thinking.
So Di Sorbo, who over the past 25 years had turned the fledgling Schenectady Hospice and related organizations into national models of palliative care, decided to answer another calling: Bringing hospice care to AIDS-ravaged Africa.
As a co-founder and executive director of the Foundation for Hospices in sub-Saharan Africa (FHSSA), he oversees the daunting challenges of partnering with local hospice organizations to provide care in the far reaches of a land where AIDS claims roughly 7,000 lives a day.
“The global AIDS pandemic and other international tragedies are opportunities to forge our global connectedness,” Di Sorbo said. “And FHSSA is well positioned to make a difference by supporting so many of Africa’s growing hospice programs.”
Di Sorbo co-founded FHSSA with the organization’s first board chair, Dr. Bernice Catherine Harper and hospice directors Peter Sarver and Paul Brenner. The African organization is also part of the National Hospice and Palliative Care Organization, based in Alexandria, Va.
The organization’s top priority, of course, is fundraising from American citizens and organizations. “We have a chance, consistent with our basic hospice work in every community, to engage that community in the global war on AIDS,” Di Sorbo said. “There is no greater challenge and all of us … can take great pride in sharing in the overall response. We can raise millions for palliative care in Africa, where U.S. dollars can go far."
Di Sorbo emphasizes that FHSSA’s mission is in partnering with hospice organizations in Africa, not in imposing a first-world model to solve problems. “We may have the technical expertise and the talent level, but we must rely on our African colleagues to identify needs so that we can mobilize and develop the projects collaboratively.”
Most projects are short term, a week or less, for things like pediatric palliative care training, bereavement care of orphans and care-for-the-caregiver support, Web site development, quality improvement, and strategic planning.
Among the rewards of partnering with the African organizations, Di Sorbo said, is the growing recognition of hospice as a “community service agency” and “social change agent.” Partnering also has taught his organization to “really listen with respect.”
And hospice, though it deals mainly with those at the end of life, can help stop the spread of AIDS. “Prevention requires behavior change,” he said. “We have a teachable moment with every death.”
With his wife, Cynthia, a nurse and hospice caseworker, Di Sorbo spends a bit more than four months per year in Africa. They also spend time in Washington D.C., where FHSSA is based, and their home in Ghent, N.Y.
Last fall at Union’s Homecoming, DiSorbo received the Eliphalet Nott Medal, presented to distinguished alumni who have achieved success in their professional lives. Throughout his career, he has maintained close ties with Union, calling on faculty, staff and students as hospice volunteers.
Hospice milestones:
1975 Katherine Woodford, a student in a women in management graduate course offered by Union, begins a feasibility study for Hospice of Schenectady.
1978 Union College, the first hospice board and Katherine Woodford develop New York state legislation creating a hospice demonstration project, which becomes the first hospice legislation in the United States.
1979 New York State Hospice Association incorporated at Union College.
1980 Phil Di Sorbo ’71 hired as first CEO of Hospice of Schenectady.
1983 Hospice of Schenectady becomes the first hospice in the nation to be certified by Medicare and to receive federal reimbursement payments.
1999 A visit to Africa leads to incorporation (with two other New York hospices) of the Foundation for Hospices in Sub-Saharan Africa.
2006 Di Sorbo named executive director of the sub-Saharan organization.
2007 Di Sorbo helps to launch the Diana Legacy Fund, aimed at supporting hospice care in Africa.
The roots of hospice care at Union
The international success of the hospice program that began at Union College in 1975 can be attributed to three key factors:
- A motivated team of faculty, students and community members who had been touched by “bad deaths.”
- The arrival of a young and ambitious executive director.
- Help from inside the federal government during the creation of new laws.
Hospice had its beginnings at Union in 1975, a few years after psychiatrist and author Elisabeth Kubler-Ross had popularized the idea of dying with dignity in her 1969 book, On Death and Dying. Katherine Woodford, then a graduate student and nurse, undertook a hospice feasibility study with Adelaide Oppenheim, an adjunct professor who taught a course titled Women in Management in what would become the Union Graduate College. Woodford was in part motivated by her father’s death, which happened at home after weeks of relative comfort.
At the time, Woodford knew of only three hospice programs: one at St. Christopher’s Hospital in her native England and one each in New Haven, Conn. and Buffalo. By the end of her project at Union, she had gathered a team of people that would become a steering committee for the nascent hospice organization. One of them was Rudy Nydegger, professor of psychology at Union.
“Hospice was an idea whose time had come,” said Nydegger, who served as the first president of the organization. “Everyone and their families are touched by death. Everyone has a horror story about people who have died badly and did not need to. One of interesting things I found about Union and Schenectady was the talent pool of highly motivated people who were interested in the hospice movement, knew how to raise money and get things done.”
In 1978, coincidentally the same year Kubler-Ross spoke at Union’s Commencement, Hospice of Schenectady was incorporated. It had a board and an office on the second floor above Old Chapel. A year later, the New York State Hospice Association was incorporated at Union, thanks to the volunteer services of attorney Thomas Hayner.
In 1980, the board decided it was time to hire an executive director. Enter Phil Di Sorbo, a Phi Beta Kappa who had graduated Union in 1971 summa cum laude. After earning a master’s degree in counseling, he took a job at Schenectady Catholic Family and Community Services. He answered the hospice ad, he recalled, because he was intrigued by the write-up about the new program.
“When we hired Phil, we had $5,000 in the bank,” Nydegger says. “His first job was to raise enough money to pay his salary.”
Di Sorbo worked closely with state legislators to introduce hospice legislation in New York. That laid the groundwork for a watershed moment in November of 1983 when Hospice of Schenectady became the first hospice to receive federal Medicare certification and funding. He worked closely with officials in the federal government to negotiate the certification process, and even had input into the initial regulations.
When DiSorbo left to join the Foundation for Hospices in sub-Saharan Africa (FHSSA) in 2007, he was executive director of the largest hospice north of Washington, D.C. Today, Community Hospice is a network of six regional programs covering eight counties that serves over 600 patients each day and has an annual budget of more than $40 million. Employees number about 400.
“Hospice of Schenectady, and later Community Hospice, became a leader in the state and country largely because of Phil’s leadership,” Nydegger said.
The Union connection
Union volunteers have had a strong presence in Community Hospice since it began, with dozens of volunteers serving for long periods. Today, dozens of students, faculty and staff take the 25-hour volunteer training program and in-service training sessions. Most years, Union provides between five and 10 volunteers, according to Sue Conlin, volunteer service coordinator for Community Hospice.
“I trained as a hospice volunteer seven years ago and can honestly say it has been a life-altering experience,” said Carol Weisse, director of Union’s Health Professions Program. “Spending time with people during their last few months, days, and even hours makes you think deeply about your own life and how to live life more fully.”
Karen Williams, research associate professor of biology, a hospice volunteer for 10 years, has worked with Weisse to recruit student hospice volunteers. The experience, she said, is especially valuable to those going into the health care field. “I admire the pre-health students who get involved in hospice,” she said. “What a wonderful opportunity for them to be involved in [end of life issues]. This is something the medical community has not always done well.”
The Williams family used hospice last fall when Karen’s father died, an experience that made her a better volunteer, she said. She kept copious notes in a diary on everything from her father’s condition to a list of therapists – information that comes in handy in answering questions from patients and families.
Williams last year recruited her husband, George, professor of computer science emeritus, as a hospice volunteer for what he called “part of the retirement thing.” Besides visiting patients, the couple delivers medications to homebound patients. “We call ourselves the drug runners,” Karen said. George set up the computers in the hospice’s first office at Union.
Amanda Carpenter ’07, an Obenzinger Scholar (given to promising pre-med students), has taken on some of the hospice’s most challenging cases, including the past year with a 17-year-old boy, Weisse said. Another alumnus, Adam Howe ’05, volunteered for two years at Union before heading off to Albany Medical College.
Jean Underwood (wife of Jim Underwood, professor emeritus) has been an active volunteer for years too, well known at hospice for her ability to deal with the most difficult cases like a family dealing with drug and alcohol abuse.
Among hospice collaborations under way, College officials have met with Di Sorbo to arrange the placement of Union students in FHSSA partner hospices, and plans call for two students to travel to Africa next year. Also, Minerva Houses and other student organizations are planning to raise funds for the Diana Legacy Fund.
“Hospice is a nice organization to work for and they treat their volunteers well,” Karen Williams said. Especially valuable, she said, are the in-service training sessions that cover topics ranging from dementia to massage therapy. Hospice also hosts regular memorial services, a chance for families and caregivers to reconnect, she added.
For Karen Williams, the most rewarding part of hospice is the connection she makes with patients. She recalled visiting a woman at Schenectady’s Kingsway Nursing Home and showing her photos of a recent trip to Alaska. “When I was leaving, she had a smile on her face and said, ‘Thanks for the tour.’ You never know what is going to touch some of these people.”
Supporting hospice care in Africa
South Africa’s Archbishop Desmond Tutu urged the support of hospice programs across Africa when he spoke at the recent launch of the Diana Legacy Fund, which in part supports the Foundation for Hospices in Sub-Saharan Africa.
“Hospice and palliative care are desperately needed,” Tutu said. “I know we throw figures and statistics at you [but] put the face of someone you know, someone you love, on those statistics.”
The fund is named in memory of Diana, Princess of Wales, whose 1987 visits with African AIDS patients stirred worldwide awareness of the crisis. The summer of 2007 marked the 10th anniversary of Diana’s death. Di Sorbo encourages individuals, churches and businesses to donate to the Diana Legacy Fund, the only charity solely dedicated to hospice and palliative care in Africa.
For more information, or to give to the Diana Legacy Fund, please visit www.dianalegacyfund.org.
To learn about the work of the Foundation for Hospices in sub-Saharan Africa, please visit www.fhssa.org.