Bringing children home: Kentucky Children’s Hospital’s approach to pediatric end-of-life care
When parents have a child with a serious illness, all they want is for their child to get well. If that no longer becomes a possibility, often all they want is to bring their child home.
Most — around 70% — of pediatric deaths related to illness occur in the hospital, but the Kentucky Children’s Health Pediatric Advanced Care Team offers some families the chance to transport their child home using life-sustaining technology. That’s not an easy feat; these patients are medically fragile, and the outcome can be unpredictable. A team made up of hospital administrators, hospice providers, coroner and the transportation team comes up with a plan. The child’s parents complete an informed consent procedure, recognizing that their child may not survive the journey home. The transportation team tries to ensure that the journey is as comfortable as possible, as well as planning what to do if the child’s condition deteriorates on the journey. If that happens, he or she will be supported as they pass without resuscitation efforts.
“Every transport is a logistical challenge,” said Dan Andrews, manager of neonatal and pediatric transport for KCH. “Our crews adapt to every situation with skill and sensitivity, ensuring families are supported with dignity and grace during these complex and delicate transitions.”
“Our team has facilitated many home transports over the past five years,” said Lindsay Ragsdale, M.D., division chief of pediatric palliative care at KCH. “Many families have had the opportunity to meet extended family at home for the first time. They have had time at home with their child and have their last moments surrounded by love and family.”
In addition to offering bereavement support for the families of the children, transportation team members — used to racing to a home to save someone, not to say goodbye to them — receive extra training and support.
Dr. Ragsdale remembered a case when a newborn baby with congenital anomalies that were incompatible with life came home for the first and last time.
“It’s OK, Dr. Ragsdale,” the baby’s mother told her. “I knew this was going to happen. But I am grateful to be able to bring her home.”