The Power of Story: The Importance of Narrative in Oncology

Cancer Stories: The Art of Oncology

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 published data. The term anecdotal evidence is often wielded pejoratively, with the implication that the anecdote inherently lessens the value of the evidence.

Yet after many years in medicine, I now believe that stories are not just useful, they are essential. Listening to and reflecting on patient stories gifts us an otherwise elusive power to minister to suffering, connect meaningfully, influence decision making, and offer healing encounters, in a way that data provision alone cannot do.

I personally have seen the power of stories shift mindsets, grow solidarity, change culture, and shape policy. Sharing my own vulnerable stories about grief, infertility, pregnancy loss, sexism, abuses in our medical education system, and other uncomfortable topics has opened doors for difficult dialogue, driven problem-solving, and affected systemic changes, both within my institution and on a national level. I think it is our responsibility, as cancer care professionals, to recognize, practice, and leverage this power with purpose.

For me, on an individual level, the repetitive act of listening to stories has fundamentally changed me as a clinician and person. Being on the receiving end of another person's story compels me to slow down, to question my own heuristics and biases, and lean into my own vulnerabilities. The practice of telling my own story deepens my capacity for self-reflection, humility, and mindful presence. Sharing others' stories encourages me to lend compassion, patience, and grace to all of us enmeshed together in this chaotic, messy health care space. Collectively, all of these practices help me reflect on my boundaries, examine ethical situations with empathy, and reframe my role and responsibility as a healer.

As a scientist, I also think that the power of stories extends beyond the bedside. The most rigorous and impactful research studies are often those inspired by the stories of patients and families. Early in my career, I sat down with a group of bereaved parents to hear their thoughts about my research concept. Their vivid stories about communication between the medical team and their family directly shaped my research question and study design for the better. More than a decade later, listening to stories from patients, caregivers, and colleagues continues to help my scientific team develop holistic aims, hypotheses, and methods; implement study procedures that respect the person over the disease; and analyze and synthesize findings that honor and elevate community voices. Storytelling also strengthens my scientific writing, reminding me to not get lost in the weeds and simply tell a narrative that cuts to the heart of what matters to our community.

Yet the art of storytelling carries relatively little prestige or social currency in the field of oncology, particularly when compared with evidence-based practice. Oncology training rightly emphasizes the development of rigorous skills in collection, analysis, and interpretation of data; fewer aspects of our training incentivize us to value the art of storytelling. I worry that this is a mistake.

In my opinion, we spend substantial time teaching our trainees what to say and not enough time teaching them how to bear witness and listen. We have drifted too far from the core philosophy of Hippocrates, who believed that careful listening to patients' stories held the key to revealing diagnostic and therapeutic truths.1 Rooted in Hippocratic principles, the first clinical skill that medical students practice is how to elicit a patient history, listen actively, and reflect on a patient's unique story to develop a problem list, assessment, and plan.

At the core of each patient encounter is the fundamental concept of narrative competence, comprising a clinician's skills with respect to bearing witness to, acknowledging, interpreting, and sharing stories.2 About two decades ago, the field of narrative medicine, or medicine practiced with narrative competence, was popularized and championed as an approach for teaching and sustaining holistic, person-centered health care.3 Today, a growing literature shows us that training and practice in narrative competence has the potential to improve communication, collaboration, empathy, mindfulness, and professionalism in medicine. In the field of oncology, multiple studies have investigated the feasibility, acceptability, and impact of interventions such as reflective reading and writing, oral and visual storytelling through art and music, and experiential learning sessions on narrative competence for cancer care professionals. While mostly single-site studies, the findings suggest that narrative-based interventions can foster mindfulness, emotional connection, and solidarity; improve self-awareness and self-compassion; encourage personal satisfaction, sense of accomplishment, and overall well-being; improve ethical decision making; strengthen collaboration and teamwork; bolster resilience; and mitigate burnout and secondary traumatic stress for cancer care professionals.4-10

Yet clinicians often face barriers to the integration of narrative-based approaches in education and clinical practice. Lack of time, resources, and support are commonly cited as roadblocks to incorporating storytelling in day-to-day activities. Templated notes may hinder the dual, interrelated processes of listening to and documenting patients' stories, reducing lived experiences to a litany of check boxes. Despite these challenges, simple exercises can increase narrative competence with minimal time or effort. Even a short, one-time session of reflective writing can help health care professionals explore and learn from difficult clinical experiences with seriously ill patients.11 For those who don't enjoy writing, the brief act of reviewing patient narratives can be impactful: for example, oncologists who spent a few minutes reading digital stories written by patients with cancer reported positive changes in their patient-clinician relationship, a heightened sense of empathy and intimacy, a greater appreciation of the patient as an individual, and rehumanization of health care work.4

For narrative-based approaches to grow and thrive in our field, though, we need clearer definitions of what constitutes narrative practice in oncology. I suggest that narrative oncology should encompass the purposeful practice of eliciting, listening to, reflecting on, creating, or sharing stories about the cancer experience, told through diverse mediums, with intentional integration of these acts in clinical practice, research, and educational arenas. Narrative-based approaches or interventions in oncology should comprise a spectrum of deliberate activities including reflective reading, interpretation, discourse, and writing practices designed to emphasize and promote self-awareness, compassion, and humanism in cancer care.

I encourage us, as a field, to respect narrative oncology as a unique corpus of knowledge, comprising content experts to inform its relevant applications to education, research, and clinical practice and governed by its own criteria to assess competency and impact. We can appreciate that the aims and skills underpinning expert narrative oncology practice may overlap with other areas of expertise, such as communication skills training, while recognizing the distinct competencies required to engage in, role model, facilitate, teach, and study narrative practice in oncology.

Each time that I listen carefully to a patient's story, or share my own story with others, I feel myself grow as a clinician and as a person. It can be tricky to measure or prove this growth, and some people may argue that quantification belies the spirit of narrative practice. Personally, I believe that, for the field of narrative oncology to grow in legitimacy and impact, we need to develop some consensus standards and collaborative approaches to demonstrate value to naysayers. I am hopeful that oncology, as an evidence-based field, can rise to this challenge. At the same time, we should anticipate a priori that we won't be able to capture every intangible impact, and lack of data must not discourage us from advocating for the importance of stories in cancer care.

Certainly, changing the culture around storytelling in oncology will not be effortless. I believe that a multipronged strategic approach is needed to grow credibility for the field of narrative oncology, and I encourage colleagues to consider supporting the stepping stones outlined in Table 1.

I hope that we are reaching an era in modern medicine when the power of listening to and telling stories need not be controversial; it is time for the field of oncology to be proactive and purposeful about legitimizing, teaching, and practicing storytelling across clinical, education, and research settings to benefit patients, caregivers, clinicians, researchers, and communities.

When I think back on that difficult DNR conversation years ago, I remember none of the data informing our high-stakes medical decision making. I don't recall the odds of further disease progression or third-line treatment efficacy. I do remember, though, each story that the mother shared, as I knelt at her feet, listening quietly. She told me stories about hope and faith. About fear and despair. About family and resilience. In the end, I got the DNR, but I left the room with so much more.

Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I am your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University. Today, we are joined by Dr. Erica Kaye, the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital. In this episode, we will be discussing her Art of Oncology article, "The Power of Story.”

At the time of this recording, our guest has no disclosures.

Erica, welcome to our podcast and thank you for joining us.

Dr. Erica Kaye: Thank you so much for having me. I am so glad to be here with you today.

Dr. Lidia Schapira: It is such a pleasure. Before we dive into the content of this beautiful essay, and a call to action in a way, tell us a little bit about your relationship to writing as a physician both in training and now in practice and also as a researcher and educator. What role does writing have for you as a person?

Dr. Erica Kaye: That is such an important question, one that I am not sure I have ever been formally asked before so thank you. Thank you. So transparently I studied English as an undergraduate and focused specifically in poetry for my Bachelor of Arts degree. And so I spent a lot of time during a formative period in my life thinking carefully about language and writing, about the construction and also the analysis of words and how carefully we choose them to communicate and share a message. And then when I entered into medical school, I spent a lot of time thinking about the power of language, about the ways in which the words we choose convey a profound meaning and enable us to connect with others in incredibly powerful ways. And I was fortunate, through some luck, to encounter the field of palliative care, which is anchored in the power of language and communication. And so for me, it was a natural marriage of the things that I felt so passionate about, learning communication and conveying stories through words and through body language in order to connect meaningfully with patients and families in a very sacred space at the, arguably the most difficult and stressful times in their life.

And so as I now train other students and many come through our clinical and research programs, from undergraduates to graduate and medical students and residents and subspecialty fellows, we really emphasize the importance of storytelling in the work that we do in medicine and in research, and I would argue as people of the world, and try to help students understand that the ways that we construct narratives about our patients, about one another as colleagues, about the world in which we work and live in, the ways that we construct and reflect on those stories, so powerfully influence how we feel in our practice and how we collaborate with one another in the work that we do. And for some of us, we can connect really deeply with that message through writing. And through others, we can act through oral storytelling, or through mindful listening and reflection. So there are lots of different ways to engage in the creation and sharing of those stories.

Dr. Lidia Schapira: So, Erica, let me just go a little bit deeper into this and into the personal meaning for you. You talk about poetry, and the one lovely thing about poetry is that you have to use very few words to get out the essence and meaning of your message. So for you, does writing or reflecting through storytelling bring you joy, lighten some of the emotional burden perhaps that we carry because of the work we do? Tell us a little bit more about it from a very personal perspective.

Dr. Erica Kaye: That's a fascinating question. I am not the kind of person who would say that the practice of writing itself brings me joy, although sometimes it does. But I think, for me, the joy comes in the practice itself, from the knowledge that something I write will connect with another person. And so I think a lot in my practice, as I'm choosing carefully the words that I want to place on a page for others to read or hear, I think about how that might resonate or create meaning making for somebody else.

Dr. Lidia Schapira: So you talk about intentionality as well, right? That seems to be what I'm hearing you say, intentionality and putting effort into actually thinking through this instead of it being perhaps an automatic process. That's incredible. And I would say that the other thing that I'm hearing you say, maybe you didn't frame it exactly like this, is that in the act of choosing your words, in delivering and crafting a message, you're also showing some wisdom or appreciating the wisdom that can come from the proper telling of such stories. Is that- does that get at it, or am I making this up?

Dr. Erica Kaye: I think that’s true. And I also think that I find something sacred about the idea of being able to connect in a meaningful place with somebody who I may not know. And sometimes there's conscious, purposeful direction towards that moment. And sometimes I think it may be unconscious trying to create a message or a feeling for the idea or the hope that someone may receive it on the other end.

Dr. Lidia Schapira: That’s a beautiful thought. Turning back to the title you chose for the essay is about power, so let’s talk a little bit about power. As I see that is one of the central messages that it’s not just about releasing our own emotions onto a page, but it’s also about leveraging some of the power that we have to implement change or to help others. You talk a lot about the elusive power but you also talk about very concrete benefits of storytelling. Can you tell us a little more about how we should think about that?

Dr. Erica Kaye: I love the word ‘power’, and not because of the way in which it’s traditionally used in a unidirectional approach wielded by someone against or on another, but because of the root. So I think of empowerment and how important it is for people to feel like they own and can share their power. And so I think the reason I chose that title was a purposeful and directive reminder to the reader that we all share in this collective power, so that title becomes then in and of itself a form of empowerment.

Dr. Lidia Schapira: That’s a very important and relevant message. You also talk about the fact that telling stories has generally been devalued within our professional community because it is dismissed and put in the same bucket as anecdotes. And anecdotes, we have all been trained are sort of bad when we’re at the bedside making recommendations. Can you untangle that for us a little bit, see story from the anecdotes, and the power that comes from storytelling and how it is different from the aspects of anecdotal medicine that we have been taught to set aside?

Dr. Erica Kaye: I think that’s a complicated question. For me, there is not a whole lot of difference between the data point, an anecdote, which I agree with pejoratively characterized and the story. And a lot of these are semantics and how we choose to present information to shape a message that conveys how we think or feel to influence the people we care about around us. And in our profession of oncology, I think we have over relied on quantitative data points to do that task of conveying a message that’s important to us to influence the people around us, and for good reason because our clinical trials are reliant on these data, that inform our next steps, how we practice, how we advance our field so that we can better care for our patients and families. And I also believe there’s huge value in the anecdote. For me, an anecdote is a story of how an individual experienced something or how we observed someone experiencing something. And I think there’s huge value in listening to our colleagues share an anecdote about something that happened when they treated a patient or hearing a patient or family member share an anecdote about what they experienced in this space. And I think these anecdotes contribute to the practice of medicine as an art and not simply as rote progression to an algorithm founded exclusively on data.

And maybe it’s semantics, but for me, I think, when we capture all of this information and reconceptualize it as a story, it somewhat levels the playing field. For me, when you tell me a story that’s rooted in quantitative data about why this information is important to you and conveys a message to influence someone that you care about, that’s very meaningful, and I want to listen to that story. And similarly, when someone shares a story rooted in more abstract information about their personal experiences, what they see, feel, think, perceive, wonder, hope, worry about, that’s also incredibly important information that I want to create space for and integrate into how I think about sharing a story about something I care about to influence others.

Dr. Lidia Schapira: And you say in your essay that that requires competence or it requires a series of skills, and study and preparation. Tell us a little bit more about how one gets to be competent in telling a story in such a way that you just did that really becomes a tool and is in and of itself a powerful tool.

Dr. Erica Kaye: That is a really important question. And I like to start by debunking the fallacy that I think many of us carry, at least internally, it’s a message that gets socialized, this idea that you are either good at this sort of thing or you’re not good at it. And I think that that is largely baloney. I think that some of us intrinsically tend more towards active listening and the art of storytelling resonates with us. And because of that, we lean into it more and have more opportunities to practice, mess up, think about it, practice again. And maybe others intrinsically are less drawn to it and therefore have fewer of those opportunities to practice, mess up, and try again. I really believe though that all of us have the ability to become excellent, impactful, effective storytellers in medicine and in our lives. And I think that practice is arguably the single most important practical component or ingredient. However, in order to create those spaces for practice, facilitate it, be open to it, I personally think that the most important attributes to name for people, to hold them accountable to our humility and vulnerability, and unfortunately, medicine and science do not incentivize us to lean into either humility and vulnerability. And so I think there are a lot of opportunities for us as we role model in medicine and in science, as we create opportunities for learners, for us to be more verbal about socializing those terms as positive attributes so that we can grow together in this space.

Dr. Lidia Schapira: So, Erica, I am hearing you talking about a cultural change, that the culture is not oriented towards some of these values that you say that are sort or essential or underpinnings for promoting storytelling and opening ourselves up to that more expressive part, whether or not we are wonderful with words as you are or not or struggle to put them together into an understandable sentence. Can you talk a little bit about the table that you provide in your article and the very practical suggestions that help us think more about this in practical terms about, again, moving the culture slightly away from what you described as the status quo which is more aggressive and puts down the story and one that values the story and cultivates traits such as humility, openness, and curiosity?

Dr. Erica Kaye: Thank you. I think, like many things in our world, the answer often lies in growing a new generation, who thinks innovatively and often differently than we have historically. And that doesn’t mean that we give up on ourselves or our peers, our seniors. It means that we empower and listen to the lessons that we can learn from the people coming up after us. And in doing so, they will shape and change the culture in our present as well as for others in the future. And so the table, I think, focuses on a few areas. First, is the idea of integrating the arts and humanities into education earlier, and reconceptualizing what we mandate as essential prerequisites for a career in medicine and science. So, why do we feel so compelled to say that Physics is an absolute requirement in order to apply to medical school, yet understanding the art of communication is not? What are the opportunities at an undergraduate level for us to rethink how we encourage students in this very formative time to begin shaping their influences and prioritizing their interests and what they feel to be most valuable in shaping who they become on their journey?

I also think there are concrete opportunities for us to be empowered at an institution or center level where we can have one on one conversations with our peers, with our leaders about our personal experiences with the power of storytelling, how it shapes our profession in real time and the value that we derive and that we see the potential for learners to derive. And then I think there are concrete strategies for us to think bigger on a national level leveraging our professional organizations, making sure that we have purposeful space for these types of narrative medicine experiences at our national meetings, that we create special interest groups and forums that facilitate and foster the coordination of networking and mentorship and sponsorship around these meaningful topics. And that we think carefully about our avenues for scholarship and hold our medical and inter professional journals accountable to valuing the human centered experience as much as we value population level data

Dr. Lidia Schapira: So, my final question, of course we can go on chatting for a long time but just to bring this podcast to a close, Erica can you think of perhaps an Art of Oncology essay that we've published that sort of opened your thinking up in new ways or that really impacted you, touched you, or moved you as a reader?

Dr. Erica Kaye: Absolutely. There have been many pieces that have touched and moved me, and so without lessening the impact of all of the others, I might mention a piece entitled "Knuckles," about the experience of, I believe, a radiation oncologists, who felt challenged in connecting with the lived experience of one of her patients who came from a very different set of circumstances than her, and espoused beliefs that she found abhorrent and the effort poured into connecting on a human to human level and the ways in which that connection can be so powerful in shaping minds, changing biases, opening our eyes to our collective human experience. I found that piece to be very beautiful.

Dr. Lidia Schapira: I am getting chills and a little misty as I hear you talk about it. So thank you for reading, thank you for writing, thank you for sending us your work and for everything that you do in this field.

Dr. Erica Kaye: I am so grateful that JCO creates this meaningful, important space for oncology healthcare professionals to appreciate the power of story in oncology

Dr. Lidia Schapira: Thank you, Erica. And until next time, thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcast.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience and conclusions. Guests' statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

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Guest Bio:

Dr. Erica Kaye is the Director of Research in Quality of Life and Palliative Care at St. Jude's Children's Research Hospital.

Additional Materials:

Table 1

Knuckles, by Kathryn Hitchcock

Knuckles podcast