Browse by Medical Category
Friday, May 20, 2011
“You all were prepared for the day that you would walk through these doors, as a parent, we’re never prepared for the day that we walk through that door,” Erin Quinney, PT, reminded the clinicians beside her at this year’s Family-Centered Grand Rounds at MassGeneral Hospital for Children (MGHfC). Quinney first came through the doors at MGHfC in October, 2004. She had just given birth to her son, Austin, at 33 weeks. Though her pregnancy was normal, Quinney’s son began having difficulty breathing after he was born and was brought to MGHfC on his second day of life. That marked the beginning of a nearly three-month hospital stay. Surgeon Daniel Ryan, MD, operated on Austin at 10 weeks to repair his esophageal atresia, a disorder in which the esophagus, the path between the mouth and stomach, doesn’t develop properly. Austin went home, but he was back in the hospital soon after with because his anastomosis (where they connected his esophagus to his stomach) had narrowed. He subsequently became a “frequent flyer” at MGHfC over the next few years for the array of medical problems that followed.
The third-annual Family-Centered Grand Rounds, “The A Team— Building an Effective Healthcare Team,” honed in on the importance of team communication in care. Before a full O’Keeffe Auditorium and an audience of senior clinicians, nurse managers, administrators and residents, Mrs. Quinney led the panel discussion among members of her son’s care team. “I felt that the better the communication was, the better the care and the better I felt about the outcome,” explained Quinney, who is also co-chair of MGHfC’s Family Advisory Council, a group of family members and hospital staff dedicated to promoting family-centered care, a tenet of MGHfC. “It wasn’t just what I asked or what I communicated, but how I did that in order to build those relationships” with the care team.Quinney began by telling her story and then passed the microphone to Dr. Ryan, the leader of Austin’s care team, followed by gastroenterologist Garrett Zella, MD; Julie Piotrowski, NP; endocrinologist Takara Stanley, MD, and child life specialist Ashley Reardon, CCLS.
Over the course of Austin’s almost seven years, he has faced numerous medical challenges, including unexplainable gastrointestinal bleeding. As they have worked to make Austin better, the team members also learned valuable lessons. “Sometimes the best thing is to say, ‘I don’t know the answer to that,’” Dr. Zella said. He recommended leaving the room and speaking with the rest of the care team before returning to the parent with an answer. The principals of family-centered care include the idea that parents and patients partner with clinicians. Child life specialist Ashley Reardon, CCLS, recommends clinicians regard parents as their best allies, because parents have the most background knowledge about the patient. Endocrinologist Takara Stanley, MD, who was an MGHfC resident when she took care of Austin, reminded her peers that “it helps as a resident to approach everything as a learner.” She added, “In terms of learning I don’t mean just learning medical things but you can learn what it’s like to be someone with a sick child, you can learn what it’s like to be Austin, you can learn what it’s like to be up all night.”Quinney agreed, and reminded clinicians coming into the situation of a well-established team: “Any knowledge that you can gain by reading his entire medical record, which as I’m sure you can guess is very large, wouldn’t help you truly to know Austin, as opposed to the relationships that I have and Austin has with these providers.” She added of Austin’s care team: “They haven’t just cared for him; in my perspective, they have cared about him and about our family.” Julie Piotrowski, NP, reminded clinicians to “be open on the receiving end,” as parents of complex patients may need attention even when the child is not in the hospital. “Sometimes a five-second conversation really goes miles.”
Sandy Clancy, PhD, co-chair of the Family Advisory Council and the event’s organizer, has been a longtime advocate for family-centered care. “The major takeaway for me was we always learn so much when we have the opportunity to listen to a parent,” she said. “Their insights are so incredibly valuable to helping us change our practice.”As a result of last year’s Family-Centered Grand Rounds, Clancy led the charge to create a communications training program designed for pediatric residents. Funded by the MGHfC Quality and Safety Program, the training continues on a monthly basis. Clancy says the Family Advisory Council met following this year’s event and discussed strategies to empower parents to be successful communicators and advocates for their children. The council will likely revisit this theme in future meetings and create new resources for families. Though many patients come through the hospital without needing a complex care team, Austin’s experience is a teachable one, explained Ronald Kleinman, MD, physician in chief of MGHfC. “There are certain children who are going to require attention. We can assess for the need for a team early on then we should define what the role of every person on that team is going to be, starting with the parent,” Kleinman said. “We’re early in this process of understanding how to take care of the 10-20 percent of youngsters who really need us to be together to take care of them for a long period of time.” Clancy, who also works in the Coordinated Care Clinic at MGHfC, has been instrumental in developing Emergency Department care plans for all pediatric patients with complex medical needs. These short summaries of medical history serve as educational, communication tools for clinicians who come across patients like Austin for the first time. “I just really feel happy that the voices of parents are listened to and that the parent experience is being more and more integrated into education,” Clancy said after the event. “There’s just no way that that won’t improve the practice and quality of care.”
Back to Top