Why We Listen to Patients

The Redesign of MUSC’s Pediatric Cardiac Intensive Care Unit Offers a Stunning Example of the Power of Engaging Patients and Families in Hospitals

Most children’s hospitals today are moving towards a private room model, but there’s often an exception made for the Pediatric Cardiac Intensive Care Unit (PCICU), where patients in the very worst condition need constant monitoring from healthcare staff. 


That’s what MUSC had in mind when they set out to redesign their new Children’s Hospital—a PCICU that had some private rooms, but also an open bay area that allowed for unmitigated access and monitoring. 


“There are plenty of clinical reasons why they would want that,” said Caroline DeLongchamps, the Patient and Family Centered Care Manager in the Quality and Safety Department of MUSC. “In our current unit we have some private rooms, but they are mostly open bays. From the nurse’s station, care team members can lay eyes on most patients at any given time. That’s what they are comfortable with.”


But thanks to an emphasis on patient and family engagement at the hospital, families were brought in to weigh in on the redesign process and one mother helped to change the course of the PCICU’s design.


“This particular mom didn't speak up in that meeting for a couple of reasons—for one, I know she had to leave early, but it was also pretty intimidating; There were a lot of clinicians in the room at that first meeting,” DeLongchamps recalled. “But she did compose an email to me and the chair of the children's hospital Patient and Family Advisory Council (PFAC) chairman which walked us through what happened with her family.”


The mother lost her daughter who was a patient in MUSC’s PCICU in her final days and had strong feelings about those open bay beds. 


“It was very difficult for her during such a scary time,” DeLongchamps said as she recounted the details of the email. “When her emotions were at their highest, she had the least privacy. She wanted to cry but held it in most of the time so as not to disturb the families and babies close to her. She wanted to play music for her daughter, but didn't want to disturb the patient and family that were right next to her. She needed to pump but didn’t want to leave the unit. There was a whole range of emotions that she felt she wasn't allowed to have because of the lack of privacy.”


A physician made an exception and the family was eventually moved into one of the few private rooms available, but the mother still felt strongly about the experience, enough to weigh in via her heartfelt email. It had a powerful effect on DeLongchamps and others.


“Private [in this case] means a room with glass doors. It’s not actually very private, but at least there are a few walls to provide dignity and respect,” she explained. “As she said, it allowed them to be a family. They could sing to their baby and hold each other.  Ultimately, on the last day of their daughter’s life, it allowed her parents to have a beautiful morning filled with visitors, then a peaceful, quiet time to take her last breaths with just those that brought her into this world: mom, dad and God. She cherishes that morning and it is one of the things that brings her comfort. It was such a powerful statement.”


DeLongchamps was bound and determined to read the woman’s email at the next design meeting, which was limited to hospital staff. “I was going to ask the [lead] physician to allow me to read it for the staff before they began their work,” she said.


But before she could, that same lead physician, who was one of the chief advocates for an open bay plan, stood up and told the group he had something to read to them.


“And he read that same email, then folded it up, put it in his pocket, and said ‘our discussion about walls vs. no walls is over. We will have all private rooms in our new unit,’” she recounted. “I left that room weeping.”    


Now, MUSC Children’s Hospital PCICU is going to better serve patients and their families. Thanks to a concerted effort of engagement and one woman’s courage to share her story, the hospital will now provide a higher quality of care, allowing patients and families to feel comfortable when they need it most.