Changes will improve care for kids

Often, he told The Evangelist, "the needs of the kids related to pain control and addressing their suffering take second fiddle to treating their disease. Kids should also be getting good palliative care."

While treating a child's symptoms while in Hospice is important, Mr. DiSorbo hopes to go further: He would like to see programs that create a continuum of care for children, from the diagnosis of a life-threatening illness through Hospice care.

"There are barriers. The care program for children is fragmented," he explained. "The end-of-life phase is not integrated into the whole delivery of health care."

Mr. DiSorbo cited studies showing that children who receive Hospice care earlier suffer less -- and that children are often subjected to active treatments of a disease "that go on beyond any expectation of further effect."

The director is working toward several changes, including:

* better outreach: The Community Hospice recently signed a contract with Albany Medical Center to coordinate treatment of children with AIDS and hopes to expand that to cover other diseases;

* educational opportunities for professionals and caregivers, to foster a more holistic approach to meeting the needs of families and children. An upcoming Community Hospice training session will discuss attending to spirituality while giving medical care;

* a comprehensive children's program -- called the Program of All-Inclusive Care for Children, or PACC -- that continues through the end of life and the bereavement process. The Community Hospice is currently approaching state legislators about using $1 million in federal funds earmarked for a children's Hospice program in three states toward that end.

"The issue in our community is how to see early on in treatments that kids get good palliative care," Mr. DiSorbo stated. "When it gets to the end stage, there's confusion, distress, guilt. We want to change that. We want suffering to be eliminated. We'd like to make sure the services of Hospice are well-known and well-utilized." (KB)

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