|By Kang, Crystal|
Hospice & Palliative Care of
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
"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
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
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
Hospice & Palliative Care of
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