“I think about our final days with Maia often,” Shannon Deeb wrote of her daughter. “Since we had been in the PCICU so long, we had one of the private rooms. I'm so thankful for that room; after being in it for almost three months, it had become our home away from home. That room allowed us to spend the night with Maia next to us two nights before she passed away. (Yes, we broke many rules that night!) Two days later it allowed us 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. I cherish that morning, and it is one of the things that brings me comfort as it was such a beautiful and peaceful time.”

Shannon wrote these words as part of a plea to the medical director of the pediatric cardiac intensive care unit (PCICU) at the Medical University of South Carolina (MUSC). Plans were being made to build a new children’s hospital, and the PCICU team wanted the new facility to have a hybrid unit that included both private rooms and open bays. Having been in one of these units in the current facility, Shannon understood the team’s desire for open bays. She knew care team members felt it would be easier to see and access the patient from the nurses’ station, particularly in an emergency. However, Shannon had a different perspective. When her emotions had been at their highest during her daughter’s stay, Shannon didn’t feel like she could cry because everyone could see her. She couldn’t play music for her daughter because of their proximity to the next patient. She needed to pump her breast milk but did not want to leave her baby. She felt a whole range of emotions that she wasn’t allowed to express because of the lack of privacy.

When a physician made an exception and moved Shannon’s family into one of the few private rooms available, it made a powerful impact on them. The three walls that constituted a private room had glass front doors, but those walls gave them the dignity and respect they needed to be a family and, ultimately, the space for Shannon and her husband to say goodbye to their daughter.

After attending a hospital design meeting, Shannon felt compelled to share her experience in writing. Once leaders heard and understood the profound impact that privacy had on her family, they made an immediate decision to have private rooms for every patient in the new hospital, not just the PCICU. With her brief but powerful story, Shannon changed the design of the new Shawn Jenkins Children’s Hospital and Pearl Tourville Women’s Pavilion at MUSC.

Thanks to stories like Shannon’s, we at MUSC recognize that narratives have the power to create change. Like Shannon, other MUSC patients and family members have impacted policy, practice, and education at our institution by sharing stories that highlight the imperative of partnering with every patient and family member to improve quality and safety. Yet not every story told in the hope of improving systems of care has been equally engaging or memorable. Those that include vivid description and detail, demonstrate awareness of purpose and audience, and include a call to action are most successful at inspiring change. With this in mind, the Department of Patient-and Family-Centered Care collaborated with the Office of Humanities to design Patient Story Writing Workshops that are now also co-led by a Family Faculty member, Kelly Loyd, who completed our first workshop and helped us refine it. These workshops are designed to teach elements of writing craft that help patients or family members create a five- to seven-minute version of their stories that will engage a healthcare audience. Ultimately, those who complete the workshop can serve as Family Faculty and teach MUSC students, faculty, and staff about core concepts of Patient- and Family-Centered care through their narratives. In this blog post, we provide an overview of our workshop design and describe the various formats where patients and families are invited to share their stories.

The Workshop

As manager of Patient-and Family-Centered Care, Caroline DeLongchamps begins the workshop with an overview of MUSC Health, including the system’s mission, vision and values. Then she provides the definition and core concepts of Patient-and Family-Centered Care (PFCC). PFCC requires healthcare providers to work with patients and families, rather than only doing to and for them. Respect, dignity, participation, information-sharing, and collaboration are essential elements to creating mutually beneficial partnerships among providers, patients, and their families ¹ . By giving examples of the core concepts in the healthcare setting, we help workshop participants recall their own healthcare experiences. Participants begin to understand that when one or more of the core concepts was present in their care it usually led to a positive outcome and, when absent, it may have left them feeling angry, scared, confused or hurt.

After this introduction, Lisa Kerr, Director of the MUSC Office of Humanities, begins the portion of the workshop devoted to writing craft. Her instruction focuses on the differences between writing expressively for personal healing and writing a personal story for a public audience. Lisa then discusses elements of writing craft that make a story engaging and memorable, including dialogue, description, and imagery. Through a series of interactive exercises, writers learn to develop a “hook,” how to “show” instead of “tell,” and how to conclude with a “takeaway.” For each exercise, participants are offered a chance to share. Although sharing is always optional, many participants are eager to do so, and this sharing becomes meaningful for everyone, sparking discussion and additional ideas. Using this process, we move writers from brainstorming to considering how their story might take shape. To help participants imagine how their own story might become a five- to seven-minute piece, Kelly Loyd reads her story as a model. After hearing Kelly’s story, participants are given time to work on their own. Some participants put pen to paper immediately. Others prefer to talk through their ideas with one of the three workshop leaders. By the end of the workshop, most participants express having some sense of direction—or feeling inspired by the interaction with us and others. As we close the workshop, we invite all participants to submit their drafts to us so that we can help the writers with their revisions.

Sharing Our Stories

Our storytellers may choose to share their narratives in a variety of ways. A young girl shared her story with institutional leaders during a leadership conference to emphasize how essential a holistic approach is to the care of sickle cell patients. A person who struggled with addiction credits MUSC with saving his life after he was diagnosed with Hepatitis C. “I had no hope and no money,” he said, “but they didn’t give up on me.” The mother of a patient at the Institute of Psychiatry shared her story to an orientation class of new employees entitled, “Walk a Mile in My Shoes.” A pediatric patient with cystic fibrosis recorded his story to implore staff to use proper infection prevention practices, “because 30 seconds of laziness should not cost me years of my life.” This patient’s story is one of many that have been recorded, edited, and included in a Patient Story Library that is available to all students, staff, and faculty at MUSC. The voices of our storytellers remind us that health care is personal and that there is tremendous value in partnering with patients and families and including them as members of the health care team.

One of the most powerful storytelling experiences happens in MUSC student classrooms in a session called “More than Words.” Our class sessions are designed to teach MUSC medical, nursing, pharmacy, and other graduate health science students through patient and family stories and to discuss with them why stories are valuable in health care education and practice. To this end, Lisa Kerr introduces the concept of narrative medicine and health humanities and Caroline DeLongchamps presents the core concepts of Patient- and Family-Centered Care before introducing our Family Faculty. Once introduced, these Family Faculty members read the written versions of their stories one at a time. Their stories include themes of partnering in the care of the patient, effective communication, treating patients and families with respect and dignity, and shared-decision making. When these themes are present, we often hear stories of extraordinary gratitude and privilege, even in the wake of pain and loss. However, the converse is also true, and occasionally when one or more of the above mentioned themes is missing from a story, we hear about a negative experience or harm that affects the patient and family. The goal is to teach future health care providers the importance of partnering with their patients and families to improve the quality and safety of the care we provide.

When Kelly Loyd reads her story, students hear about her journey with her twin girls who were born 11 ½ weeks early and spent 77 days at MUSC in the Neonatal Intensive Care Unit. Kelly describes her role as a mom at the bedside and how she was offered the opportunity to partner with care team members to provide that extra bit of continuity and preparation when the time came to take her girls home. Kelly encourages the students to offer all patients and family members the same opportunities that she was offered to participate and collaborate in their health care journeys.

After all stories have been read aloud to the MUSC students, we open the floor for discussion. We assure them that we are offering a safe, open time for dialogue and want them to feel comfortable asking us questions that may affect their decision-making when they are treating their own patients. We have found this to be an energizing discussion in every session, and we always leave the classroom feeling confident that the future of health care is in good hands.

Our Future

Working with patients and families as they craft and share their stories is a rewarding collaboration for all of us. It provides patients and family members a voice at MUSC and allows them as Family Faculty to partner with care team members to educate our students, faculty, and staff. Informed by the disciplines of communication, rhetoric, and creative writing, this program sits at the intersection of the health humanities and Patient-and Family-Centered Care. While the Patient Story Library includes a diverse set of stories, we’ve had less success recruiting a diverse group to become members of our Family Faculty. To meet this challenge, we continue to develop ways to reach a wider population. For example, we’ve discussed the use of scribes to allow people to tell their stories when they don’t feel as comfortable writing it down themselves. We’re also planning an online-only version of the workshop to reach individuals in their homes. As Kelly Loyd says in her own story, it’s important that everyone is empowered to use their voice, to know their stories can effect change, and so we continue to look for ways to offer everyone “a seat at the table.”

• Caroline DeLongchamps is the parent of a former pediatric trauma patient and now serves as the Manager of Patient-and Family-Centered Care for MUSC Health.
• Lisa Kerr is a Professor of writing and humanities at MUSC Health.
• Kelly Loyd is the mother of twin daughters born prematurely at MUSC Children’s hospital. She now serves as a patient and family advisor and member of the Family Faculty program.
• Shannon Deeb’s daughter was a patient which compelled her to serve for a number of years on the MUSC Children’s Health Patient and Family Advisory Council.