One of my favorite questions to ask parents during an initial patient care encounter has nothing to do with a chief complaint, review of systems or medical history: “How did you choose your child’s name?” This simple query can quickly establish trust and rapport, even amidst a dire clinical situation. It also frequently involves an interesting story and invites the parents to share one of the first pages of their child’s narrative.
In pediatric palliative care, we aim to provide an extra layer of support for children with serious illness and their families. We affirm parents’ expertise in knowing their child and intentionally encourage them to share their non-medical stories. Sure, we ask about symptoms and upcoming therapies, but we also inquire about siblings and hobbies, values and priorities, support networks and spiritual needs.
We often ask parents, “Can you tell us about your child and family when you’re not in the hospital?” We suggest they show us what their home life is like. We are not simply shooting the breeze: these conversations inform how we will guide them through future complex medical decisions. Often overlooked during routine medical encounters, these details can help practitioners deliver more comprehensive, compassionate and goal-concordant care.
The power of stories goes beyond learning about patients’ backgrounds and beliefs. Asking open-ended questions and permitting time for meaningful answers exemplifies fundamental empathic communication skills. Stories also can aid with decision-making: while doctors’ problem-solving approach often emphasizes data-driven science, patients are less swayed by abstract numbers than by anecdotes of similar patients or lessons learned from reflecting on their own medical journey.
Fortunately, storytelling enjoys a virtually universal reach, available in any setting, among all specialties and across cultures. It has even been adapted into therapeutic strategies for a variety of medical situations – from promoting daily well-being (e.g., health narratives) to honoring patients near the end of life (e.g., dignity therapy).
Stories through narrative medicine practices (e.g., Baylor’s HEAL program) are valuable tools for providers even outside the clinical encounter. Such educational and reflective opportunities help us expand our observational skills, share our feelings about challenging experiences with colleagues and reconnect with the humanities of our profession.
A skeptic might counter: does this really matter? Is storytelling just a tall tale? I contend that the inclusion of storytelling in medicine reflects sound bioethics principles. For example, purposefully eliciting patients’ stories helps them feel heard and supported, reinforcing autonomy and respect for their choices. Furthermore, a story-sharing approach can open the door to victims of systemic/implicit biases and reclaim justice, as many patients (e.g., racial/ethnic minorities, non-English-speaking persons) are at higher risk for their personhood to be misinterpreted, distorted or ignored.
In short, stories matter. They help both providers and patients persevere. They bring people together, fostering familiarity and sometimes humor to solidify a relationship that is too often fragmented and impersonal. Stories can offer comfort in a chaotic moment and solace over many years. Unfortunately, stories can be forgotten in the daily shuffle of scans and meetings, lost in the bloated medical record and unnoticed at the bedside amidst the machines and alarms. With every encounter, we should turn our attention back to our patient and take the time to witness to their personal story – and all it can teach us.
By Dr. Matthew T. McEvoy, clinical fellow in pediatric hospice and palliative medicine at Baylor College of Medicine and Texas Children’s Hospital