The Children’s Specialized Hospital (CSH), an RWJBarnabas Health facility, expanded its palliative care program to be the first system-based pediatric offering of its kind in the U.S., according to an April 5 announcement.
Pediatric palliative care, according to CSH, “is specialized medical care for children living with life-limiting or life-altering illness that focuses on quality of life, symptom management, and easing the burden of illness for the child and the family.”
Led by Dr. Colin O’Reilly, vice president and chief medical officer of CSH, and in partnership with Westfield-based Liam’s Room Inc., CSH expanded these services across the New Brunswick-based RWJBarnabas Health network with increased physician training and additional outpatient and long-term care services.
After their son Liam died at 16 months old from a chronic brain disorder, Lisa and Peter McNamara founded Liam’s Room to advocate for including pediatric palliative care at the time of diagnosis for any child facing a chronic or potentially life-limiting condition.
As part of the expanded program, several CSH clinicians have completed training at the Palliative Care Education and Practice program at Harvard Medical School Center for Palliative Care. This group is now working with health care providers at RWJBarnabas’ three other acute care children’s hospitals to create a system-wide program, where providers can share resources.
These hospitals are The Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital in New Brunswick; Children’s Hospital of New Jersey at Newark Beth Israel Medical Center in Newark; and The Unterberg Children’s Hospital at Monmouth Medical Center in Long Branch.
O’Reilly said there is a misconception about palliative care and that it is “only equated with death.”
In 2022, the Children’s Specialized Hospital cared for approximately 35,000 children with complex medical conditions and their families.
“While end-of-life and hospice care is an important aspect of palliative care, it’s only a small part of what we do as palliative care providers,” O’Reilly said. “Pediatric palliative care is about focusing on a child and family’s total health – that of their mind, body, and spirit. We find ways to support their total health while also providing their needed medical interventions. … We are proud to expand these services to families across RWJBarnabas Health.”
As part of the program, CSH will also launch outpatient services, and its Long Term Care Center in Mountainside is renovating the facility’s long-term care unit to include 14 additional beds, including the state’s fourth “Liam’s Room” for inpatient hospice care dedicated to the McNamaras’ work.
In 2020, RWJBarnabas Health launched a one-year Anchor Training program to increase the number of pediatric clinicians and providers trained in palliative care for children. To date, 47 clinicians have graduated from the program, and 42 will graduate in June.d