Three organizations on the north side of Pittsburgh are joining forces in an effort to bring more hospice and palliative care to the African American community. Family Hospice & Palliative Care CEO Rafael Sciullo says a few years ago it became clear that there was a disparity in access to hospice and palliative care. “We were finding, as has been the trend nationally, that access for African Americans to hospice and palliative care has been very limited and certainly not at the level it was for other populations,” says Sciullo.
The CEO says he knew he had to do something. “We began to formulate, what were the obstacles creating that and then how could we overcome them with a program that responded positively to support, responded to education, to outreach and to using the right language,” says Sciullo.
Family Hospice teamed up with the Northside Christian Health Center and the Bidwell United Presbyterian Church to form an initiative called “Transitions.” Sciullo says through focus groups, they learned that many African Americans felt hospice was only for rich white people and that they equated the word “hospice” with “the end.” He says the community did not want to see death as the end but rather as a transition to another life. Bidwell United Presbyterian Church Pastor De Niece Welch says many in the community did not even know what palliative care meant and others equated hospice with nursing homes, which she says carries a negative connotation in the community. She says she is often called to a member’s bedside as they near death and she sees pain and suffering that she knows is not necessary.
Welch says she tells those with life limiting illness, and their families, “You can live your best life until your transition from this life to the next.” But she says it is not enough to just talk about the benefits of hospice care. She says you need to be able to point to a provider who can help rather than forcing families to “call around looking for help.”
Welch says Transitions will allow African Americans on the north side to continue their tradition of caring for family members at home for as long as possible without having to put loved ones through undue pain and without having to make trips to the emergency room. She says people are dying in bright loud emergency rooms rather than at home with loved ones where they can be more comfortable. Most of Family Hospice’s clients stay in the homes. Last year Family Hospice cared for an average of 400 clients a day but have just 12 beds in its inpatient facility.
Sciullo says providing families with the needed training is a key part of the Transitions as well as recruiting volunteers from Manchester and other north side communities to help provide care and to spread the word.
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