Redefining the Narrative of Patient-Centered Care

Author: Julianna Marchese '27

A smiling woman with dark hair and sparkling earrings wears a red and pink plaid blazer in front of a research poster on patient attire at UPMC Children's Hospital.

In the quiet spaces of pediatric oncology, Dr. Christy Lucas ‘16 finds purpose in being a faithful narrator—helping patients and families tell, to the very last pages, the stories they never thought they’d have to write.

Lucas’ dedication to service may have begun as a Miracle League volunteer in Pittsburgh and continued through autism research as an undergraduate at Notre Dame, but now—as a third-year Pediatric Hematology/Oncology Fellow at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center—her efforts in holistic care continues to highlight the voices of patients with cancer and sickle cell disease through narrative medicine.

A term coined by physician and literary scholar Dr. Rita Charon that emphasizes a patient’s story as a central component of empathetic medical practice, narrative medicine inspires and challenges practitioners to, in Lucas’s words, “reflect on our own humanity and of those we care for, and ask the questions we don’t usually ask or ask the questions where we may not like the answer”—to hear people’s voices. 


 

“I’m comfortable sitting with people in the uncomfortable moments of life,” admits Lucas, who was recognized by the Notre Dame Alumni Association as a 2025 Domer Dozen honoree. “My calling and my niche in life is what I call: ‘to sit with people in the valleys.’”

Now, as a master’s student in Media, Medicine, and Health at Harvard Medical School, Lucas explores parental bereavement through her capstone, “Ever After.” Her thoughtful listening and storytelling approach values accompaniment and honors terminal pediatric patients after their passing, expanding caregiving to include before, during, and after end-of-life.

To Lucas, narrative medicine is a means to preserve a child’s legacy that remains ever-present with their families:

“In bereavement, those parents aren’t often asked to share their stories,” Lucas explains. “If you just give people the chance to share their story, what will they tell you?

“Most of them [parents] didn’t focus on the death of their child, and most of them didn’t even mention that [their child] had cancer. … They told these funny stories about poop jokes and pranks, and painted this picture of what their kid would look like. … It’s an intimate look into how they remember their child.”

Serving as a pediatric oncologist, Lucas credits her interdisciplinary education for helping develop her integrative knowledge and capacity to care. Though she spent her first undergraduate year at the University of Pittsburgh, Lucas was drawn to Notre Dame’s beauty, dedication to social justice, and community of hard-working students with “grit, but who are also kind.” She transferred as a sophomore, joining her twin sister, Cara ’16, under the Dome to pursue a double major in science preprofessional studies and psychology.

As a junior, Lucas enrolled in Psychology and Medicine, a course co-taught by adjunct professor Dr. Robert White and Kathleen Kolberg, Ph.D., associate dean in the College of Science, that highlights the human aspects of medicine not shown in television dramas. It was in that class that Lucas brainstormed “Stitches with Hope,” a program that provides inpatient pediatric patients with comfortable clothing to preserve patient dignity and individual expression.

She carried her passion for patient-centered care with her through Penn State Medical College, graduating in 2020. During medical school, Lucas took her undergraduate project and established it as a permanent fund at the UPMC Children’s Hospital of Pittsburgh Foundation. Since August 2018, “Stitches with Hope” has provided clothing to children to “sustain a sense of identity, dignity, and hope in the healing process.” She went on to complete her residency at UPMC Children’s Hospital of Pittsburgh.

After witnessing the impact of “Stitches with Hope,” Lucas ambitiously sought to abolish the generic hospital gown and to innovate in-patient care. After discussing with essential healthcare workers, she realized that hospital gowns are a “somewhat necessary evil,” but have existed for years without significant alterations. So, Lucas conducted a qualitative study.

She found that neither patients nor doctors and nurses liked the gowns—patients did not believe there was an alternative, and doctors and nurses “often felt ‘guilt’ for giving a garment they themselves wouldn’t wear.” Then, she had patients draw their ideal inpatient attire. From the data, Lucas invented UMATTER: Uniquely Made Attire, Tailored for Tubes & Testing, Encouraging Respect. The design is an evidence-based, patient-guided, provider-approved garment patented in the European Union and pending in the United States.

While she loves her calling, Lucas also sits with the grief and suffering that accompanies treating children with terminal cancer. On heavy days, she finds resonance in the arts, an outlet she attributes to her “Arts & Letters brain” fostered at Notre Dame. Some days, she listens to a playlist on Spotify. Other days, Lucas references Pieter Bruegel the Elder’s Landscape with the Fall of Icarus, a painting she studied in a narrative ethics class.

“[The painting is] a commentary on our view of human suffering. For some people, it’s hard and you have to turn away because you can’t jump into the water and save people. But for me, I’ve kind of always identified with the one who sees the suffering of the drowned angel in the water and [jumps] in to be present with them.”

When asked to imagine the future of pediatric cancer care, Lucas places her hope in “the people in palliative care and the people we get to take care of.” The Penn State Andrew Creasy and Savino Family Award recipient—honored as a graduating medical student who shows potential for curing and treating childhood cancer and other life-threatening pediatric illnesses—reflects on a pilgrimage she attended as an undergraduate at Notre Dame and the words spoken by Rev. Jim King, C.S.C., ’98, on that trip: “God is not finished with you yet.”

“Advocate for yourself and advocate for who you want to be,” she says. “You owe it to yourself to be a faithful narrator to your own story. You are enough—just as you are—all ways, always.”

Originally published by Julianna Marchese '27 at weare.nd.edu on November 11, 2025.