34 min
The Power of Story: The Importance of Narrative in Oncology Cancer Stories: The Art of Oncology
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- Science
Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology.
TRANSCRIPT
Narrator: The Power of Story, Erica C. Kaye, MD, MPH (10.1200/JCO.24.00013)
Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room.
Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life.
My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.”
Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care.
As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation.
Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling.
For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope.
As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care.
In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another.
“I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes.
“We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.”
Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed publish
Listen to ASCO’s Journal of Clinical Oncology essay, “The Power of Story” by Dr. Erica Kaye, Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. The essay is followed by an interview with Kaye and host Dr. Lidia Schapira. Kaye shares her strategies to grow the field of narrative oncology.
TRANSCRIPT
Narrator: The Power of Story, Erica C. Kaye, MD, MPH (10.1200/JCO.24.00013)
Everyone knew the baby was dying. The data were overwhelming, indisputable. Widely metastatic cancer, multiorgan system failure, a belly grotesquely distended by tumor and blood and gangrenous guts. “A corpse on a vent,” the nurses whispered outside the room.
Swaddled in the crib, a distorted body hidden neatly by crisp sheets, the baby's sweet face peeked out, cherubic and still. Her mother stared fixedly at her peaceful, doll-like face, and no amount of data presented by the medical team could persuade her that the child was nearing the end of life.
My job was to get the DNR. Swathed in a paper gown, gloves, and mask, I hovered in the doorway. The baby's mother sat in a chair beside the crib, hands over her eyes. I knelt on the floor at her feet. “I don't want to hear it,” she said, without looking at me. “I don't need to know the statistics. My baby will live.”
Oncology is a discipline driven by evidence. Quantitative data inform our treatment recommendations, prognostication, development of novel therapeutics, allocation of resources and funding, and scientific communication. We enumerate and measure variables and outcomes with the imperative goal of advancing science and strengthening our clinical care.
As a research scientist, I believe in the power of data. We cannot cure cancer, optimize quality of life, or improve end-of-life care without rigorous investigation.
Sometimes, though, I wonder if our profession's appreciation for the collection, analysis, and reporting of data causes us to overlook another profound and vital tool at our fingertips—the power of storytelling.
For me, a story is an account of the consequential parts of a person's life. It may spotlight a history of present illness or underscore a lifetime of illness. Sometimes, a story focuses on a singular decision; other times, it zooms out to explore the vast nuances of our complex lives—joy, suffering, love, loss, belonging, grief, and hope.
As a pediatric palliative oncologist, it's my role and privilege to bear witness and make space for the stories that honor people's lived experiences. Over the past 20 years, I've grown to believe that listening to and sharing stories is more than just the bedrock of humanism in medicine. It is also a powerful and effective tool for the effective practice of quality health care.
In my experience—for our patients who are suffering, their caregivers who face impossible decisions, and our colleagues who struggle to do no harm—knowing the data is rarely enough to navigate the terrain of modern medicine. We need stories to find our way, to reach people where they are, to help one another process devastating experiences, to choose a path forward and find the strength to put one foot in front of another.
“I hear you,” I said quietly, looking up at her. Her hands balled into fists, still covering her eyes.
“We won't talk about the numbers today.” Minutes passed, as we listened to the whir of the ventilator. Slowly, her fists unclenched, and her red, raw eyes met mine. “She's not a number,” I said softly. “She's a precious, cherished baby. She's her own person, not a percentage. She has a unique story, and I'm here to listen.”
Arguing for the power of stories may sound poetically naïve, even reckless to some. I've heard colleagues criticize narratives of illness experiences as irrelevant, outliers, or misleading. We are quick to discount stories that do not align rigorously with peer-reviewed publish
34 min