Grief to growth: Employee channels personal loss to help patients and families

This slideshow requires JavaScript.

Nearly a decade after losing her young daughter to a devastating illness, Shannan Shaw now finds solace in comforting others, helping Michigan Medicine patients and their families through circumstances she knows too well.

Shannan’s daughter Maddie was a patient when Shannan first started volunteering for the organization’s Patient and Family Centered Care (PFCC) unit, an office that engages patients and family members to work alongside hospital leadership and staff on programs to improve the patient experience.

“For 16 months, I came here every day to see my daughter. The staff became a second family to us,” said Shannan, now a PFCC coordinator in the Congenital Heart Center. “That’s why I’m committed to ensuring every other family has access to such care.”

Maddie was only 2 when she was diagnosed in early 2007 with a severe case of viral myocarditis, a virus that often leads to heart failure. She was placed on a waiting list for a heart transplant, but succumbed to her disease the following spring. At the time, Shannan had already started volunteering with the PFCC program, and channeled her grief into the role.

“I was able to give feedback on such things as the patient welcome book and — once we lost Maddie — bereavement materials on what it’s like to lose a child,” Shannan said. “I volunteered my time because I wanted to make it easier for families and staff members to deal with the type of things we experienced.”

As a PFCC volunteer, Shannan helped contribute to a draft of a patient and family welcome handbook. She worked on a bereavement committee to create process recommendations to give families more continuity and consistency in care before, during, and, especially, after the unfortunate passing of a child.

By 2015, she was hired as the PFCC coordinator for the Congenital Heart Center.

Today, with Shannan’s help, the PFCC is often involved in every stage of the patient experience, from setting up an appointment to a nutrition services team member taking a dinner order over the phone.

“I can remember when Maddie was first admitted, overhearing the doctors talking about different options for her care. But I wasn’t a part of that conversation,” Shannan said. “Today, patients and families are there at the bedside as a major part of these conversations.”

Rounding at the CHC is now referred to as PFCC rounding. Doctors, fellows, bedside nurses, dietary workers, pharmacy representatives, social workers and child life specialists come around at least once a day to meet with families and patients about the care being administered, a change that Shannan championed.

“As a team, we created brochures explaining and teaching what family-centered rounding is, why it’s important, and how families can participate,” Shannan said. “I then tailored it to CHC-specific processes. In all, it has added transparency to the care our patients receive.”

Shannan also runs a family mentoring program at the CHC, helping to recruit PFCC advisors to mentor and provide support for one another.

“During our time with Maddie, we had nobody who could come up to us and say ‘I’ve been where you are, and I’m here to support you.’ I’m trying to change that for our current families,” she said.

Click here to learn more about PFCC and the services the department offers.