“Being a member of the Pediatric Family Advisory Council (PFAC) at Duke is a club no one wants to be in, yet you are the only [people] who understand,” Carrie Tuttle explains. PFAC was started at Duke to place more emphasis on patient family-centered care, a movement in medicine to bring patients and families back as part of the medical team. Carrie is well versed on the need from her own experience, when her 9-month-old son Heath had a heart transplant at Duke nine years ago with the best possible outcome. Since then, she has given back by working on the PFAC as well as the PicFAC, Pediatric Intensive Care Family Advisory Council.
“Duke is trying to hear parents’ voices about children’s care, and so I feel compelled to support families with sick children as someone who has been in their situation,” she says. One difference the PFAC has made is suggesting that parents be allowed in the room when doctors are doing rounds on their child. “In the past parents were kept out of the room when doctors discussed their child,” Carrie says. “Duke realized parents knew important information about their child that could help the doctors and the patient.”
The volunteers in the PFAC are not all parents whose child has survived a traumatic illness, but bringing together people who have lived with a hospitalized sick child allows Duke the perspective on how they can improve the difficult experience.
“When Heath was in the pediatric intensive care unit, there was no place for a parent to lie down, let alone sleep near their child. There was just one hard chair, and we were not allowed to sleep. The PFAC suggested changing that, and sleeping recliners were added to the space by the child’s bedside,” Carrie explains. Being just a little more comfortable makes a huge difference if you have a child with a traumatic illness.
“Our group tries to think, ‘When you are in the worst moments of your life, what would make you more comfortable?'” Carrie says. The PFAC creates emergency admissions bags that have items like toothbrushes, toothpaste, deodorant, a note pad, pens, gum and a snack for parents who have a child admitted in the middle of the night. “No one rushes to the hospital with a sick child and thinks to bring a change of clothing,” Carrie says.
PFAC volunteers get HIPPA certified so they can talk with families. “We often go around and hand out snacks and talk with parents,” Carrie says. “Sometimes they just want to talk to someone else who has been through [the experience of] having a sick child.”
Families with children at Duke are lucky to have some of the best medical care available, but blessed to have volunteers like Carrie who advocate on their behalf. “It is great that Duke recognizes that things could always be improved,” she says. “When they do renovations, the PFAC members sit on committees with the medical team [and discuss] how to make spaces more family-friendly. We asked for a sleeping room for parents to take a nap in the pediatric step down unit, and Duke put one in. Having a place to sleep without the sounds of people working makes the life of a parent of a sick child dramatically better.
“I give back for the wonderful care we received at Duke,” Carrie adds. Thank goodness she does. No one plans on having a sick child. But if someone did, they’d benefit from the kind souls who volunteer with the PFAC.