Parents taking part in the palliative care panel were, from left, Donnie Franklin, Kimberly and Dave Barboza, and Jennifer and Steve Brown.
Photo by Susan Urmy
Palliative care advances highlighted at conference
Parents, caregivers, social workers, nurses, physicians, pastors and students from states including as Texas, Maryland, Alabama and Arkansas gathered to learn the latest in caring for terminally ill children Friday during the Pediatric Palliative Care Conference held at Monroe Carell Jr. Children's Hospital at Vanderbilt.
The daylong event featured breakout sessions, lectures and panel discussions on different aspects of the growing movement in care. One of the most enlightening sessions featured the bereaved families of three children.
“We were so grateful that parents of children who died at Children's Hospital were willing to come back to share their experiences with us,” said Mary Jo Gilmer, Ph.D., R.N., co-leader of the hospital's Pediatric Advanced Comfort Team (PACT) and a professor at Vanderbilt School of Nursing.
“They are the true experts and our best teachers as we work to provide the very best care for these precious children and their families.
“This is our fourth conference and we are gaining more momentum about this area of care. People are talking about these difficult issues and learning how to better help families. That's what it's all about.”
The panelists took questions from the audience and shared their personal experiences, including the gut-wrenching decisions, relationships with caregivers — communication with family members and final moments with their loved ones.
Kimberly and Dave Barboza talked about the stress of deciding on their infant son Joshua's treatment options. Joshua was diagnosed in utero with hypoplastic left heart syndrome.
“We wanted advice from nurses, the pediatric care team and family members, but in the end, it was our decision whether to pursue treatment or not for our son,” said Kimberly. They did continue treatment and felt at peace with that decision.
Donnie Franklin's nephew, Jamarius, was diagnosed with neuroblastoma at age 8 and passed away three years later. He emphasized the role of the family in palliative situations.
“We had to take this one as a whole family, and we worked to make sure everyone in the family accepted what was happening,” said Franklin.
The Brown family moved to Nashville from Memphis during the 158 days of their youngest son, Aubrey's, life. They described the excellent quality of care they received at Children's Hospital and shared the family's perspective of basically living there. “People went to tremendous lengths to allow me simple pleasures with my child,” said Aubrey's mom, Jennifer.
At the same time, she wanted health care professionals to remember, “We are suddenly dropped in the middle of this world and we're so frightened and we need your help.”
Other sessions included pain management techniques, family-centered care options and new research advances, among other things. One session focused on the growing role of healing touch as an option for dealing with pain.
Heather Barksdale, R.N., led a class that provided an overview of this growing alternative therapy that involves applying energy to a patient through light touches on specific areas of the body. Children's Hospital is gathering more information on this technique before it develops a policy for possible use at the hospital.