Hospice leader goes international

With the help of hospice care, many people in America die well these days: at home, surrounded by family and friends, with pain-relieving medication, and emotional and spiritual support.

However, in sub-Saharan Africa, where the AIDS pandemic kills 7,000 people every day, most people die in pain, without even the most basic medications to alleviate their agony. For many, the social stigma of contracting HIV means that they lose the support of their families and communities long before they lose their lives.

When Philip DiSorbo first saw those conditions in Africa in 1999, it changed his life. This month, he leaves his position as executive director of The Community Hospice, based in Rensselaer, to become director of The Foundation for Hospices in Sub-Saharan Africa.

African link

In his new role, Mr. DiSorbo will spend about four months a year in Africa, providing assistance to hospice agencies starting up there.

The rest of his time will be split between the U.S. and other developed nations, raising funds and building partnerships among parishes or organizations and African hospices needing support.

In the U.S., "Hospice started because people were dying alone, in pain, hooked up to machines, and people said there had to be a better way," he told The Evangelist. "That's how I feel about people dying of AIDS in sub-Saharan Africa. People don't realize the urgency of it."

Hospice pioneer

Mr. DiSorbo came to the hospice movement 25 years ago. While working with the elderly through Catholic Family and Community Services in Schenectady, he spotted a lengthy classified ad, seeking a director for a new hospice agency in the city.

He was so intrigued by the ad's description of holistic care for the dying that he went to the library and read up on hospice programs, then applied for the job.

As director of Hospice in Schenectady, Mr. DiSorbo helped the agency become the first such program in the country to get Medicare certification. In 1997, when the program merged with one started by St. Peter's Hospital in Albany to become The Community Hospice, now the largest such effort in New York State, Mr. DiSorbo took his skills in helping to "grow programs" into the position of executive director.

'Shaken' by scenes

Two years after the merger, he and other Hospice executives were invited by a friend to take a "vacation" in South Africa.

"He never mentioned AIDS," Mr. DiSorbo recalled. But the group ended up visiting three hospice programs: in Port Shepstone, South Africa; and in Mutare and Harare, Zimbabwe.

Describing the trip, Mr. DiSorbo used words like "shaken" and "unprepared." He saw people living in shacks, waiting to die. He heard the stories of women who had been infected with HIV by their husbands after the husbands slept with prostitutes.

"We were totally blown away," he remembered. For himself, a Catholic, "it was the beginning of a calling, so to speak."

Change of direction

Upon his return, Mr. DiSorbo posted a huge photo on the wall of his Rensselaer office: the portrait of a 19-year-old woman he met who had been thrown out of her family's house when they learned she had AIDS. By the time the photo was developed, Mr. DiSorbo knew, the woman would be dead.

The director's work took a sudden turn: He began urging The Community Hospice to support its struggling peers in sub-Saharan Africa. Staff from the Albany Diocese went to Africa to help. The Community Hospice Africa Fund was created to funnel donations to programs in Zimbabwe and South Africa in order to fund staff, care, education and prevention efforts.

"In the beginning, it was a hard sell," Mr. DiSorbo noted. But, eventually, board members and Community Hospice supporters saw that "we weren't taking money away from AIDS care in Albany or Troy. [The Africa Fund] became a way to energize and mobilize the staff. It drew attention to hospice as a social change agent -- not just caring for a local person on the edge of death, but as part of the whole human family."

Major effort

The Community Hospice now raises about $100,000 per year for its African partners. Fifty-three churches and organizations in the U.S. are matched with African hospice programs, including St. Clement's parish in Saratoga Springs (which supports Tapologo Hospice in the Diocese of Rustenberg, South Africa) and Nativity/St. Mary's in Stuyvesant Falls (which started a "loose change" program to collect donations for the Community Hospice Africa/AIDS Partnership program).

"There's no reason [those 53 churches] can't be 503," Mr. DiSorbo pointed out. "In three years, I would like to see $10 million per year going to hospices in sub-Saharan Africa."

A great deal of that money would fund education and prevention efforts. "That aspect is huge," said Mr. DiSorbo.

He noted that the most "teachable moments" for Africans learning about AIDS prevention happen when someone in a village is dying of AIDS and people gather. Then, hospice staff and volunteers "can talk about what caused this, how you can protect yourself, how men and women need to be treated with respect."

Managing pain

Another goal for Mr. DiSorbo in his new position is to work on pain management for AIDS sufferers.

In addition, he noted that American hospice workers have asked their African counterparts what they need, and, as a result, are planning management training and workshops on "care for the caregiver."

Those services will be needed for many years to come: Five million more people contract HIV every year in Africa. Mr. DiSorbo expects the morbidity rate to keep climbing for at least another decade.

God's gifts

Although he admitted he would miss his work with The Community Hospice, Mr. DiSorbo is eager to move into his new role.

"This is definitely spiritual," he remarked. "I do believe God has given us gifts we are stewards of. I happen to have these good organizational abilities and can articulate a cause, and I got exposed to [the crisis of] AIDS in Africa. I don't think that was accidental. I'm meant to do this."

(Mr. DiSorbo and his wife, Cindy, plan to keep their home in Ghent while also renting an apartment in Alexandria, Virginia, where the Foundation for Hospices in Sub-Saharan Africa is headquartered. Mrs. DiSorbo will travel with her husband and give some talks on hospice work. To donate to The Community Hospice Africa Fund, or learn how your parish or employer could partner with an African hospice program, call 285-8100 or go to www.communityhospice.org.)

One woman's story explains why he is helping Africans

People like Tenbai keep Mr. DiSorbo focused on the great needs in sub-Saharan Africa.

A hospice worker, she met the director in 1999 on his first trip to Africa. Now 25 and a supervising nurse in charge of ten community caregivers (similar to home health aides), she has encountered Mr. DiSorbo many times in his nine visits to Africa.

Last year, Tenbai shared some devastating news: She had just tested HIV-positive. In the years before she became a nurse, she had been so poor she prostituted herself to survive and suspected she been infected then.

When she confided in Mr. DiSorbo, she was still too afraid to acknowledge her status publicly.

"That brought home to me the stigma" of having AIDS in Africa, Mr. DiSorbo told The Evangelist. "Here's a caregiver who waited so long to get tested and only disclosed [the results] to a select few.

"She may not make it through the year. She has two young kids. Multiply that by thousands." (KB)

(6/15/06) [[In-content Ad]]