Pediatric palliative care can be used to support a child and their family from the time that they are diagnosed with a serious illness. As the only pediatric palliative care team in the state of Maryland, the Johns Hopkins Children’s Center’s unique program provides unparalleled support and helps families make critical decisions throughout their care journey. So far, the program has served 3,000 families.
“I think quality of life is really our focus for everyone on the team,” says Renee Boss, MD, Rembrandt Foundation Professor of Pediatric Palliative Care, associate professor of Pediatric Palliative Care and Neonatology, and core faculty at the Berman Institute of Bioethics. “And because we are a team, not just of doctors, but of doctors and nurses and chaplains and child life specialists, we can bring a more holistic approach.”
Pediatric palliative care remains largely unreimbursed by insurers, and the Norman R. and Ruth Rales Foundation is providing a 1:1 match to all gifts to the pediatric palliative care program through the end of the year. With philanthropic support, the team hopes to expand the program’s reach and bring services out of the hospital and into the community.
“I never thought about palliative care for a child,” says Dan D’Orazio, whose son, Leo, was a pediatric palliative care patient during his three years of life. “But when you’re in that situation, you start to understand the incredible angels that do this work. And so for me, palliative care is life.”
Gifts to the pediatric palliative care program support staffing, expansion to outpatient and in-home services, education and training to grow the field of palliative medicine, bereavement materials for loved ones, and long-term patient family support and programming.
“Those services, which are funded by philanthropy and individuals, have made a phenomenal difference in our life,” D’Orazio says.
Topics: Friends of Johns Hopkins Medicine, Johns Hopkins Medicine, Strengthening Partnerships