Hospice & Palliative Care of Westchester, a nonprofit hospice provider based in White Plains, has launched a program that will serve children with life-limiting illnesses who are receiving curative treatment at hospitals.
Called Comfort Crew, the new program is made up of pediatricians, nurses, social workers, spiritual care coordinators, home health aides, volunteers, therapists and grief and bereavement counselors. The team works with a child”™s medical care provider and family members to create a plan that provides the most appropriate level of relief and comfort for the young patients at home.
The program launch goes hand-in-hand with a recent law change under the Affordable Care Act that now allows children with life-limiting illnesses to simultaneously receive palliative care while undergoing curative treatment in hospitals. Before the law change, children couldn”™t receive both palliative care and curative treatment, and parents had to choose whether their children would comfortably rest at home with trained staff visiting them or stay at a hospital under a doctor”™s care, said Nancy Caputi, pediatric palliative care coordinator at Hospice & Palliative Care of Westchester (HPCW).
“Thousands of children are dying in hospitals every year,” Caputi said. “Most want to be at home, and there”™s a need for this kind of program to provide enhanced comfort. With this new law, now there”™s a clear choice families can make for the setting of care and setting of death.”
Unlike the nonprofit”™s hospice program that provides care services for patients with a life expectancy of six months or less, Comfort Crew allows children to receive palliative care a lot sooner. The pediatric palliative care team cares for children with a life expectancy of one year or less.
“We were getting children who had weeks left to their life after being in the hospital for months and months,” HPCW Executive Director Mary Spengler said. “It came to the point where physicians said, ”˜There”™s absolutely nothing we can do.”™ And the family decided they don”™t want the child to die in a hospital. They want them to die at home.”
Three years ago, Spengler, along with 20 staff members, 65 employees and more than 50 volunteers started examining the level of pediatric palliative care available and saw a clear need to start a program in Westchester. After discussions, research and roundtable meetings with pediatric oncologists and area health care providers including Maria Fareri Children”™s Hospital and Blythedale Children”™s Hospital in Valhalla, Elizabeth Seton Pediatric Center in Yonkers, Memorial Sloan Kettering in Manhattan, the pediatric palliative care program built a rapport with neighboring hospitals, which have since then referred their patients to them.
HPCW is run purely by private foundation grants and donations from individuals and businesses. With five donations made to the organization last year and two more rolling in so far this year, the palliative care program can now send out more staff to visit children and their families and introduce them to the program.
“All the visits we make to the family prior to child”™s admission are important,” Spengler said. “Sometimes, these visits are two or three or four or five depending on where the family is at and where the child is at. If all they want to do is put a name to a face and see who we are, that”™s fine.”
The goal this year is to provide palliative care for at least 10 children with terminal illnesses who are undergoing curative treatment. The Comfort Crew coordinators plan to train about 15 to 20 volunteers to lead about five age-specific family bereavement groups to support children who, going through the care program, may lose their siblings.
“The Comfort Crew plans to provide family bereavement support programs after school consistently on a specific weeknight every other week,” said Bruce Page, volunteer and bereavement coordinator. “It would be an ongoing program that families would sign on for as they make a commitment to help their children cope with the death of a sibling.”
Hospice & Palliative Care of Westchester was founded in 1992 as an organization serving roughly 20 patients suffering from cancer. It now provides services for patients with any life-limiting illnesses including heart disease, cancer, leukemia, Alzheimer”™s, emphysema, cirrhosis, kidney disease, AIDS and Lou Gehrig”™s disease among others. Patients are never turned away because they don”™t have health insurance coverage.
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