When 9-year-old Kendall Burrows was treated at Johns Hopkins Children’s Center in 1995 for a rare autoimmune disease called Evans syndrome, in which the body produces antibodies that destroy blood cells, there was no palliative care program available to help families.
“Kendall was in the hospital for a long period of time before she died,” recalls her father, Dave Burrows. “During that time, there wasn’t even a place to meet except sitting in the lobby on the covers of the radiators and talking to her doctors.” There was no one to talk to about Kendall’s illness except their family, he says.
Fortunately, times have changed. When the Burrows family established the Kendall Burrows Foundation in Kendall’s memory the following year, one of their missions was to support palliative care at Johns Hopkins. With backing from the Burrows and other families and foundations, the Harriet Lane Compassionate Care program — founded in 2000 and headed by pediatrician Nancy Hutton — now offers services, including support and bereavement groups for patients’ siblings and parents, to well over 200 families a year.
Philanthropy supports several aspects of the program, Hutton notes. In clinical care, donations help fund a child life specialist with advanced counseling training. She meets with seriously ill patients and their families in the hospital or at home to help them cope with the stress of illness and improve quality of life. This specialist also offers bereavement support. It covers “what I think of as child quality of life,” says Hutton, including making sure children understand, at an age-appropriate level, what’s happening to them as well as addressing their worries and things they want known or said.
“It’s not a billable service or something we can recoup reimbursement for, and yet it’s clearly an absolutely essential part of care for children and families,” Hutton says. Gifts also support her time as a palliative care physician, allowing her lengthy meetings with patients and families, which are not covered by insurance.
Philanthropic funds also help support teaching and research in palliative care, leveraging clinician-parent communication research by neonatologist and palliative care specialist Renee Boss. Donations from the Kahlert Family Foundation and the Stavros Niarchos Foundation have supported the first Johns Hopkins pediatric fellowships in hospice and palliative medicine. This year’s Kahlert Fellow, Arun Singh, came to Johns Hopkins from a pediatric critical care medicine fellowship at Emory University, where he came to see the value of palliative medicine and what it can offer patients.
“In the middle of the night, we often have to share really bad news with patients or their families,” Singh says. “As a fellow in the intensive care unit, no one really teaches you how to break that kind of news. It’s kind of unnerving.” One of the things Singh says he appreciated most during fellowship was learning “how to orchestrate really effective communication between the medical team and families.”
Not only is the need for palliative care growing, but a palliative care elective offered to pediatric residents has become among the most popular, notes Hutton: “People are seeing the value of palliative care as a specialty area in which they want more training.”