Children to receive quality-of-life support
A new pediatric palliative care program -- for children ages 18 and under with "life-limiting" illnesses -- is now in place at Hospice of the North Shore in Danvers.
"Children are another underserved group by hospice, but for different reasons" other than minority population , said Diane Stringer, the organization's president.
Hospice care requires a prognosis of six months until death and a transition away from aggressive medical treatment.
"So often for children that is a very stark and terrible choice to make," Stringer said. "A palliative care program seeks to remove those barriers."
There is no need for a six-month prognosis and patients can continue "curative" care, as well as receive other services such as home nursing. Many of the patients live for years.
The program, which is free, provides consultation for pain and symptom management, sibling counseling, spiritual care, respite care, emergency services, and bereavement care.
It's open to children with a range of illnesses, such as cancer, cystic fibrosis, HIV, cerebral palsy, kidney or other organ failure, and progressive neurological, genetic, or metabolic disorders.
Currently, there are seven families participating in the program.
"The focus is on quality of life for these families," said program coordinator Maureen Forbes.
"We provide services for people so they are not falling through the cracks and can get help and support for things that are everyday needs.
"Our hope is that kids will have the opportunity to spend more time at home," rather than hospitalized, and that the number of emergency room visits are minimized.
"It's amazing that the little things you can do are so big to these families," Forbes said. "There is so much in the complexity of having a child with a life-limiting illness that it's overwhelming."
Hospice of the North Shore was one of 10 hospices across the state to receive funding from the Massachusetts Department of Public Health for a pediatric program. It received a grant of $55,000.
"It's such a needed service and it's been a long time coming," said Forbes.
"People envisioned this and hoped for this, and to see it come to fruition is huge. It means a lot."
For more on the pediatric palliative care program at Hospice of the North Shore, call 978-223-9777 or visit hns.org. Wendy Killeen 