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Pediatric Team Guides Families and Providers Through Difficult Medical Decisions

May 30, 2024 by Angela Ferrante and Janet Essman Franz

Pediatrics faculty and providers at UVM Children’s Hospital established the Pediatric Advanced Care Team (PACT) to add a layer of support to the care of children with serious, life-limiting illness. Many families turn to PACT as a sounding board for making difficult decisions amid their child’s medical journey.

Left to right: Jeanne Dube, RN, Lisa Anne Rasmussen, M.D., M.S., and Kaitlin Ostrander, M.D., gather for a chat in the Childrenʼs Specialty Center. (Photo: David Seaver)

Families and providers caring for pediatric patients with serious illness can feel overwhelmed by difficult decisions and symptom care throughout the course of illness and at end of life. Pediatrics faculty and providers at UVM Children’s Hospital established the Pediatric Advanced Care Team (PACT) to add a layer of support to the care of children with serious, life-limiting illness.

Lisa Anne Rasmussen, M.D., M.S., assistant professor of pediatrics and division chief for pediatric palliative services at UVM Children’s Hospital; Kaitlin Ostrander, M.D., assistant professor of pediatrics and family medicine; and Jeanne Dube, RN, a nurse with UVM Home Health and Hospice, launched PACT in October 2022. PACT collaborates with providers throughout labor-delivery, mother-baby, neonatal intensive care (NICU), pediatric intensive care (PICU), inpatient pediatrics, the Children’s Specialty Center, and community pediatric and family medicine offices, as well as home care and home hospice agencies across Vermont and northern New York.

While PACT is relatively new, families and health care providers have come to rely on PACT’s assistance and guidance. Many families turn to PACT as a sounding board for making difficult decisions amid their child’s medical journey.

“At the heart of this program lies a shared belief among everyone at the Children’s Hospital that every child and every family matters unconditionally, transcending the boundaries of their diagnosis,” Ostrander says. “Our commitment is that no matter what a family is up against, we can guide care in a way that does right by children and their families.”

Joanne Besaw, M.S.W., case management supervisor for obstetrics and midwifery at the UVM Medical Center, emphasizes PACT’s comprehensive approach. “In caring for a child whose parent sought a more holistic understanding of their baby’s severe illness amid the daily critical care focus, the team actively listened to the mother’s concerns, offering support and collaborating with the team to navigate the challenges of an extended hospital stay,” she says.

Along with caring for patients and families, PACT serves providers attending to patients with intense specialized care needs. “I’ve been struck by how much our colleagues and teams have been carrying the weight of the tough decisions that sometimes must be made themselves in the years prior to the creation of PACT, and I hope that us being here and being able to lean in will support them,” says Rasmussen. “This work takes a village, and we are grateful for the village we are now part of.”

NICU providers attest that PACT has become an integral part of assisting families with navigating and understanding exceptionally complex cases in the context of who they are as a family. Parents share how thankful they are to have had somebody by their side to help protect what was most important and meaningful during their parenting journey, from the pre-planning prior to birth, through bedside care, to the debriefs they hold after a difficult case.