Bill Would Create New State-Level Pediatric Hospice, Palliative Care Program

Connecticut legislators recently introduced a bill that aims to create a statewide pediatric hospice and palliative program.

If enacted, the bill would require the Connecticut Department of Public Health (DPH) to create a plan for the development of the program and establish general statutes around its implementation. The plan would have to be completed by Jan. 1, 2025.

The legislation comes at a time of critical need for supportive services, according to Kerry Moss, palliative care division head at Connecticut Children’s. The pediatric provider launched its palliative care services roughly a decade ago, Moss said. Connecticut Children’s provides a range of 30 pediatric services, including hospice, and has more than 40 locations in its home state, New York and Massachusetts.

The legislation was in part driven from a constituent complaint regarding a lack of available pediatric hospice services within their region, according to Moss.

“The concept that this bill is proposing is that it’s not a choice anymore, but a necessity for our state to provide good care for children,” Moss told Hospice News. “We need to expand and be able to provide palliative and hospice services for kids. This bill talks about making it a priority and initiative to really meet the needs of these kids better.”

A substantial need

Soon to come to a vote, the legislature was introduced by State Sen. Saud Anwar (D-3rd District) and received bipartisan support from State Sen. Jeff Gordon (R-35th District) and Reps. Craig Fishbein (R-90th District) and Nicole Klarides-Ditria (R-105th District).

A crucial part of the legislation will hinge on the ability to include both hospice and palliative care, Moss stated.

“It’s really important to not separate hospice and palliative care in pediatrics,” Moss said. “Children have ups and downs and sometimes that course of illness is unpredictable. Children can often benefit more from palliative medicine as a whole than just hospice services. So expanding the bill to include palliative care will be important.”

Developing a statewide pediatric hospice and palliative care program requires a three-pronged approach, according to Anwar. It begins with developing a committee of stakeholders and advocates in the space who can speak to the needs and challenges in pediatric hospice delivery, he stated during a public hearing. Additionally needed are a sufficient supply of pediatric hospice providers across the state and training opportunities available to sustain and grow clinical volumes, Anwar indicated.

Connecticut’s statewide Palliative Care Advisory Council (PCAC) plans to work collaboratively with DPH to develop the pediatric hospice program plan, according to Tracy Wodatch, president and CEO of the Connecticut Association for Healthcare at Home. Other stakeholders will include hospice and palliative care providers, as well as hospital-based practitioners, along with various other subject matter experts in the field, Wodatch stated.

Gaps in pediatric palliative and hospice care availability proliferate across the state, and the recently proposed legislation would help break down barriers in access, she indicated.

“By moving something legislatively, it’s at least giving us the support and acknowledgment that we can push forward and hopefully have a more formal program that has some funding attached to it,” Wodatch said. “Unfortunately, there simply aren’t enough pediatric hospice providers to cover the state’s needs. Our goal is to have a number of designated providers of this specialty hospice care to cover the state’s needs, so families can bring home their terminally-ill child with the necessary care and support.”

Key challenges to address

Among the largest challenges the bill aims to address include balancing patient demand with clinical capacity, Wodatch said. The volume of pediatric hospice cases is often far less than that of adult populations and generally spread out wider across geographic regions, meaning smaller caseloads but larger travel distances for providers, she explained.

Another challenge is tied to both reimbursement and labor pressures, Wodatch stated. Pediatric hospice and palliative care providers often require specialized training, and these professionals come with higher wages that are not sufficiently compensated by current reimbursement rates, she indicated.

“When you’re looking to build this service you have to have enough people to choose from, and we are really struggling right now in the nursing workforce, social workers, and other support staff – especially since the pandemic hit,” Wodatch told Hospice News. “Keeping the staff’s skills honed for less demand is challenging. There also tends to be more burnout due to the emotional toll of caring for these fragile, dying children while needing to support their families through the process. It’s a much different skill set than caring for a terminally-ill adult with adult children.”

A lack of financial support represents a “real struggle” in terms of the ability to provide the full spectrum of interdisciplinary pediatric palliative and hospice care involves, according to ToniAnn Marchione, president and CEO of Connecticut-based Regional Hospice. The hospice and palliative provider also offers pediatric end-of-life and serious illness services, along with grief support.

“We struggle with the funding and finances needed to grow our pediatric hospice program,” Marchione told Hospice News. “It’s a lack of financial capacity to match the need of specialized nurses to provide that full continuum of care in palliative and hospice. We also see families struggling financially too. It requires so much more than reimbursement in adult hospice. This bill could be life changing for so many families in Connecticut struggling with these diagnoses. It’s opening the eyes of everyone to see what a state of crisis this is and how we move forward to close gaps in access and that financial gap.”

Along with funding, key components to consider when shaping pediatric hospice and palliative care programming include geographic accessibility assessments, increased education and training opportunities and collaborative partnerships with health care providers across the continuum, according to Moss.

“We need to make sure that we are including everyone in the state in need of services, not just in pockets of our state,” Moss said. “It’s looking at the map of needs, and that’s going to require some work, but it’s a large component to expanding services.”

Collaboration and education are important to expanding access and availability of pediatric end-of-life care, according to Dr. DonnaMaria Cortezzo, associate professor in the pediatrics divisions of neonatology and pain and palliative care, and fetal care program neonatal lead at the Connecticut Children’s Medical Center – Hartford.

Having collaborative connections between pediatric hospice and palliative providers and those further upstream is a significant part of the access equation, Cortezzo said. The ability to build care collaborations is a large part of improving access, she stated.

“It’s [about] how we can ensure that we’re providing psychosocial support, chaplains, social workers, child life specialists, therapists, bereavement coordinators [to] meet all of their care needs,” Cortezzo told Hospice News. “It’s that continuity of care early on so we have seamless transitions. A limiting factor is not just the availability of necessary expertise, but also the logistics of how to provide that care. It’s a huge gap in medicine, and this bill highlights the importance of fostering those early conversations.”