This video is part of a series. View the others below to learn more about Gilchrist Kids.
GBMC Media Relations Manager host John Lazarou kicked off the discussion with Gilchrist Kids pediatric hospice nurse Erin Bull, BSN, RNC-NIC, CPLC, CHPPN, who provides hands-on nursing care for children with life-limiting illnesses and support for their families. Erin said she first developed a deep appreciation for the end of life during her time as a neonatal intensive care nurse, and is now dedicated to helping make sure families have “the best experience through the worst situation.”
For Erin, having her own child has been “a gamechanger” in how she approaches her work. “Now I see my child in the eyes of every other child I care for and I see myself in the parents,” she said. “It’s opened up a new place in my heart.”
Through her visits with families week after week, she develops close relationships with those she cares for. Speaking of one of these families, she explained, “I wasn’t just their nurse. Their son wasn’t just a patient. They were like family…. I held his hand as he took his last breath.” Being a hospice nurse, she said, is not just a job—it’s an honor.
Mary Tiso, Gilchrist Kids clinical manager, dispelled a few misconceptions about pediatric hospice care. “Most think of hospice as a place, but really hospice is a concept or philosophy,” she explained. Most patients are seen at home, though Gilchrist does have a four-bed pediatric inpatient unit at Gilchrist Center Baltimore for children who have symptoms that can’t be managed at home or who need respite care.
Qualifying for hospice requires a prognosis of six months or less to live, though many children live longer—some even live years—and some die sooner. Some people think hospice means giving up. But pediatric patients can continue to seek curative care for their illness and keep their same doctors while receiving hospice care.
“Every patient and family is so different,” said Mary. “We meet every family where they are.” Some need hands-on nursing care. Others need more social or volunteer support. After a child dies, the Gilchrist Kids team continues to offer bereavement support for the family for up to two years.
An important component of the care is emotional support for the child and for the child’s siblings. Gilchrist Kids child life therapist Beth Solomon fills this role. A sick child may be scared about treatment and worried about the future, while a sibling may be struggling with feelings of guilt or fear. Beth works with children through what she calls “the language of play.”
Many of the kids she works with are aware that they are dying, she said, even when parents try to hide it from them. Beth knows the child’s clinical history and can give them one-on-one attention to help make a child feel comfortable and in control. Though some days are undeniably sad, most of the time she is finding ways to bring joy and peace to children, making their illnesses more bearable. The best days are when she makes a child smile or laugh again, or sees them pulling pranks and just being a regular kid.
Working with dying children is emotionally difficult, but she finds meaning in helping them have the fullest life possible. “As sad and upsetting and tragic as it can be, it’s also really beautiful,” she said. “There can still be joy.”
The final guest, parent Marci Scher, gave a moving firsthand account of her experience with pediatric hospice. Her son, Ian, was cared for by Gilchrist Kids for three years before passing away from a rare disease in 2016 at age 13. Erin Bull was their nurse.
Erin was the family’s point person for all things medical—she answered their questions, ordered Ian’s medicine, answered middle of the night phone calls, and became like family. The Gilchrist team helped the entire family, including Ian’s twin sister, Becca.
With Gilchrist’s help, Marci said, “I was able to maintain working and my sanity.” Ian was able to continue going to school and maintain the best quality of life until the end. She said that Ian passed away on his own terms. He went to sleep one night, and in the morning, he was nonresponsive. Erin was there with the family when they turned his ventilator off.
“He was a very loving and caring soul,” said Marci. “No matter what we do, Ian is always with us.”