A Coalition of Care

Fairfield Egan is helping to reshape pediatric palliative care in Connecticut.

Three years ago, a colleague shared a letter with nursing professor Eileen O’Shea, DNP, APRN, PCNS-BC, CHPPN, director of Fairfield University’s Kanarek Center for Palliative Care. The letter was a desperate cry for help from a young mother who was caring for her terminally ill child at home with limited training, resources, and assistance. Though she faced each day with courage and determination, her efforts repeatedly fell short. As her child suffered, the mother—physically and emotionally drained—held faintly to hope.

An expert in pediatric palliative care, Dr. O’Shea had heard countless stories like this throughout her career. All were tragic; but this particular one, she could not shake. “It was heartbreaking,” she said. “That mom’s account profoundly affected me, and I was compelled to act.”

In 2023, Dr. O’Shea founded the Pediatric Palliative Care Coalition of Connecticut (PPCC-CT), which aims to advance palliative care services for children and their families. Its top priority is advocating for access to quality care and expanded resources, workforce education, and increased public awareness.

Through Dr. O’Shea’s work with the PPCC-CT, the Marion Peckham Egan School of Nursing and Health Studies is helping reshape pediatric palliative care in Connecticut, a state where more than 7,800 children live with serious health issues that limit their life expectancies.

“I founded the PPCC-CT to form a collaborative group of passionate clinicians, providers, and parents who were willing to advocate for high quality community palliative care services to support these children and their families,” Dr. O’Shea said.

In the short period since its founding, the coalition is already becoming a powerful voice for statewide change. Last year, it contributed written testimony that helped pass Connecticut Senate Bill 1540; today, it is supporting Public Act 25-97 to advance a Children’s Health, Advocacy, Management, and Palliative Care program.

“Political advocacy is a new and very different world for me,” Dr. O’Shea admitted, “but I am grateful for the opportunity to contribute to this vital legislative process and remain dedicated to advancing policies that honor the dignity and needs of our most vulnerable patients.”

To galvanize further support and action, Dr. O’Shea and her team plan to develop op-eds and to host a legislative breakfast at the Connecticut State Capitol with the goal of raising awareness about the needs of families who care for children with complex medical conditions at home. This year, they also plan to launch a sustainability and fundraising campaign to ensure the continuation of their work.

Though the PPCC-CT was founded by one passionate Fairfield nursing professor, its development was a collaborative effort involving multiple partnerships—most notably, the Pediatric Palliative Care Coalition of Pennsylvania (PPCC-PA) and the Kanarek Family Foundation.

Dr. O’Shea reached out to the Pennsylvania group after nearly a year of researching palliative care coalitions and other such initiatives across the United States. In existence for more than 15 years, the PPCCPA stood out for its ongoing education, online resources, and advocacy work. Moreover, it offered a formal partnership, providing nonprofit status, shared administrative support, educational resources, legal counsel, and mentorship.

Because the partnership required grant support, the Kanarek Family Foundation got involved. When its president, Robin Bennett Kanarek ’96, BSN, RN, HonD, founder of Fairfield’s Kanarek Center for Palliative Care, learned about Dr. O’Shea’s plans, she encouraged the PPCC-PA to submit a proposal to support the establishment of the PPCC-CT. The Kanarek Family Foundation subsequently provided three years of grant funding for the initiative.

More recently, the PPCC-CT has partnered with Yale Law School for support and collaboration on advocacy strategy and policy language, including a stakeholder workshop with members of the Solomon Center for Health Law and Policy.

Through its partnerships and funding, the PPCC-CT has offered a robust slate of professional education and resources, including free monthly webinars, an advocacy workshop at the Make-A-Wish Foundation of Connecticut, a new interactive resources map for families and providers, and statewide clinician training in advanced communication skills at Fairfield Egan. One initiative at a time, these efforts equip the healthcare workforce to better serve children with serious illnesses.

With a strategic plan underway and a Parent Advisory Council in development, the Connecticut coalition, under the direction of Dr. O’Shea, is growing the impact of Fairfield University. Already a leader in compassionate, family-centered care, the Egan School is now helping to remake pediatric health policy across the state through Dr. O’Shea’s unwavering commitment and resolve on behalf of children and families facing complex and lifelimiting diagnoses.

For Dr. O’Shea, PPCC-CT builds on her work at Fairfield’s Kanarek Center for Palliative Care and the Egan School of Nursing and Health Studies, where she prepares the next generation of nursing leaders. “Children with serious illnesses and their families deserve care that is compassionate, coordinated, and accessible,” she said, underscoring a commitment reaching from Fairfield’s classrooms to families across Connecticut.

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