Children’s Specialized Hospital expands Pediatric Palliative Care program

Children’s Specialized Hospital and RWJBarnabas Health recently expanded their palliative care program for children with life-limiting illnesses to be the first system-based pediatric palliative care program in the nation.

Pediatric Palliative Care 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.

When Dr. Colin O’Reilly, vice president and chief medical officer of Children’s Specialized Hospital, met Lisa McNamara in 2010, palliative care wasn’t readily available for children and families navigating complex, life-limiting illnesses. To address critical care, support needs, and to honor their own son Liam who passed away from a chronic brain disorder at just 16 months old, Lisa and her husband Peter founded the nonprofit Liam’s Room, Inc. to advocate for the necessity of including pediatric palliative care at the time of diagnosis for any child facing a chronic, or potentially life-limiting condition. Today, CSH carries on that mission expanding pediatric palliative care services across RWJBarnabas Health with increased physician training and increased outpatient and long-term care services.

Under the leadership of O’Reilly and inspired by and with the support of the McNamara family, CSH has expanded its palliative care program to be the first system-based pediatric palliative care program in the nation.

“Because of how it is seen in the adult population, there is a misconception that palliative care is only equated with death. 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. This is what we do every day with nearly all the patients that come through our doors at Children’s Specialized Hospital. We are proud to expand these services to families across RWJBarnabas Health.”

As part of the Liam’s Room’s mission, several providers at CSH have completed training at the Palliative Care Education and Practice program at Harvard Medical School Center for Palliative Care.

CSH clinicians are working to educate the next cohort of doctors, nurses and other providers on best practices across RWJBarnabas Health’s four acute care children’s hospitals – 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, along with CSH – creating a system-wide pediatric palliative care program which allows providers to share resources.

Under the leadership of Susan Dulczak, director of the Valerie Fund Children’s Center at Monmouth Medical Center, and Pediatric Medical Day Stay and Pediatric Palliative Care for RWJBarnabas Health, Maria Graminski, Pediatric Palliative Care Social Worker, and O’Reilly, RWJBarnabas Health also launched an Anchor Training program in 2020 to increase the number of pediatric clinicians and providers trained in palliative care for children.

Through the one-year training program, clinicians, social workers, and chaplains learn and share pediatric palliative care best practices including symptom management and support services for families. RWJBarnabas Health’s Anchor Training Program serves as a national model for creating designated care pathways and improving the quality of life for children with complex needs. To date, 47 clinicians from multiple disciplines have graduated from the Anchor Program, and 42 are currently enrolled and will graduate in June 2023.

As part of the pediatric palliative care program at RWJBarnabas Health, CSH will launch outpatient services as a component of the program in spring 2023. Additionally, the CSH Long Term Care Center in Mountainside is currently in the process of renovating the facility’s long term care unit to include 14 additional beds, including one “Liam’s Room” for inpatient hospice care dedicated to Peter and Lisa McNamara in recognition of their work to support children and families with potentially life-limiting illnesses which will join the three other Liam’s Rooms already in New Jersey.

In 2022, CSH cared for approximately 35,000 children with complex medical conditions and their families.