• Article
  • November 1, 2016

Discussing Quality with Patients and Families

At Children's Hospital Colorado, parents are included as part of the medical team.

By Meghan Franklin

Eric Benz, M.D.
"We think he's holding his breath due to pain," says Eric Benz, M.D., a resident at Children's Hospital Colorado, of an 18-year-old patient with autism. The patient communicates with an assistive device and has been having behavioral outbursts. The patient's mom nods in agreement.

As Benz and Jenny Reese, M.D., talk about a plan for the patient, they bring up the possibility of calling the psychiatry team for a consult. "This is not a psych issue; I can tell you," his mom says. "He's a perfectly happy, normal kid most of the time. And when these outbursts happen, he tells us he's in pain."

Benz and Reese nod, giving her their full attention. "I hear you," Benz says. He explains ruling out a psychiatric issue would be helpful. "At least then we know we've looked at all the options." The mother agrees.

When providers at Children's Hospital Colorado say "we," they're not just referring to the medical team—they are including patients and families. Reese says the goal is to involve the parents in every decision. "It's beneficial to have them see our decision-making process and be part of the team," she says. This goal stands even when care teams encounter what Reese calls "care-resistant" families.

Parents have not always been such an integral part of the care teams at Children's Colorado. "Back in the old days," says Reese, who was a medical resident there in the late 1990s, "we used to sit around a conference table to discuss our patients." The physicians would make rounds and deliver news of the care plans they had designed behind closed doors.

In 2006, family-centered rounding became standard at Children's Colorado, and the transition came with challenges. Reese says there can be added pressure for residents and medical students when they're giving a report in front of families, but she says it is the best communication format for patients' well-being.

After a decade of work in this area, Children's Hospital Colorado won the 2015 AHA-McKesson Quest for Quality Prize, an award given to one hospital annually in recognition of demonstrated commitment to safe, highly reliable, patient-centered care. Judges said patient-family involvement was one of the things that made Children's Colorado stand out.

In addition to implementing family-centered rounding, the organization introduced other initiatives to make patients and families an increasingly involved part of the care team. Here's how.

A seat on the board

Daniel Hyman, M.D., MMM, chief medical and patient safety officer, says the organization's board-to-bedside patient and family engagement strategy has played a large part in the success of the organization's quality and patient safety initiatives. Parents and patients sit on more than 30 committees at Children's Colorado, including the Board of Directors' Quality and Patient Safety Committee.

Having parents on the Board of Directors, Hyman says, "has changed the dynamic of the discussion. They infuse it with a sense of urgency, amplify the priority of everything we do, and continuously challenge us to think about new ways we can improve the care we provide to their children."

When the organization launched its campaign to eliminate preventable harm, Target Zero, in 2013, Hyman knew patients and families would be essential to the organization's efforts to reduce preventable harm. "Patients and families not only know themselves or their child best, but they have helped us with our project work and our program prioritization in ways we cannot measure," he says.

Since Target Zero's inception, patients and families have helped design family-centered processes, policies and tools that have contributed to a reduction of hospital acquired conditions by more than 30 percent and serious safety events by more than 60 percent.

A parent's perspective

Maria Hopfgarten, whose son Jacob receives regular care at the hospital, has served on the Board of Directors' Quality and Patient Safety Committee for the last five years. She got involved after a health scare caused the family to fear for Jacob's life. A team member at the Special Care Clinic asked her if she would like to get involved with a project to improve care for patients with epilepsy.

"We can give a reality check to the Board. There's a lot of data and statistics we cover; but as parents, we can give the human side of it," Hopfgarten says. "We try to drive home the importance of communicating with the family, even when something goes wrong. That can really help with closure."

Hopfgarten also chaired the Family Advisory Council and introduced a 10-week program for siblings of very sick children. Now, her major focus is getting other parents involved throughout the hospital and to voice any concerns regarding their child's care. "When you have been around the hospital, you realize we are all human. Things can go wrong," she says. "Today, I feel comfortable speaking up, but I did not feel that way 10 years ago." She reminds other parents they know their child best. "We won't be able to get to zero preventable harm without the involvement of parents," she says.

Work together to reduce harm

Parental involvement has helped develop a variety of programs at Children's Colorado. One mom, whose daughter passed away at the hospital, helped develop the Rapid Response Team (RRT), a group that patients, families or staff members can call if they feel a patient's condition is deteriorating. Since 2008, when patients and families started calling the RRT, the organization has seen more than a 50 percent reduction in codes outside of the intensive care unit.

Patients and families also played a role in the development of the "Speak Up" tool that's given to all patients and families upon admission. Staff members use the tool to educate patients and families on ways they can play a role in maintaining safety during their hospital stay.

Hyman says tools like "Speak Up" are not perfect interventions, but they're a way to further engage families and encourage them to become partners in care. "These tools ultimately help us show families what they can do to help us care for their child," he says.

Increased engagement has also contributed to the patient-family experience. A 2013 Children's Hospitals' Solutions for Patient Safety Survey found 100 percent of parent partner respondents agreed or strongly agreed they are making a positive impact, and 100 percent strongly agreed they are "likely to continue" their involvement in quality and patient safety work at Children's Colorado.

Even with these successes, Hyman says Children's Colorado still has a lot of work to do, and he would love to see more fathers, families with limited English proficiency, and families who less frequently access services at Children's Colorado get involved in this work.

For organizations considering beginning to involve parents, Hyman suggests starting with a simple project or group and building from there, and he stressed the importance for every hospital to get families heavily involved. "These kids are ultimately cared for by their parents, so we can't do this without them," he says.

Editor's note: Since the article went to print, Jacob has sadly passed away. Maria Hopfgarten continues to be involved with Children's Colorado and its patient quality outcomes.

Meghan Franklin is a senior writer at Children's Hospital Colorado. Send questions or comments to magazine@childrenshospitals.org.