In narrative medicine, the clinician seeks to understand a patient’s story of their illness and their value system. Narrative medicine helps clinicians establish an empathic and therapeutic relationship with a patient, ideally resulting in a person-centered treatment plan. Rita Charon coined that term and approach in 2001 and expanded on it in numerous subsequent publications. Several sessions of this year’s annual meeting of the American Academy of Hospice and Palliative Medicine focused on narrative medicine.
Narrative medicine is intrinsically palliative in nature, so it’s easy to see the synergy between the practice of palliative and narrative medicine. In fact, the founder of the hospice movement, Cicely Saunders, collected and studied patient narratives to develop the core end-of-life care concepts that remain the foundations for palliative and hospice care today.
The benefits of narrative medicine extend to healthcare practitioners, as well. Narrative medicine encourages empathy while also promoting self-care and reflection on the part of the practitioner. Reflection can help protect the practitioner from burnout and “empathy fatigue.” In a medical system that is often dehumanizing, narrative medicine can be humanizing for both patients and providers.
The conference sessions made me reflect on my early days as a health care provider, and my decision to leave clinical practice in part because of my own experience of empathy fatigue. As a physical therapist, I didn’t think I’d end up taking care of seriously ill and dying patients, but I was wrong. My program didn’t train me to take care of such patients, and it didn’t equip me with strategies to protect myself from empathy fatigue. I wonder if my path would have been different had I received such training. Unfortunately, Rita Charon’s work in defining the practice of narrative medicine didn’t emerge until many years after I saw my last patient.
I, like most “recovering clinicians,” have stories about patients I’ll never forget. My thoughts often return to a patient I’ll call Gloria. I wonder, in hindsight, how I might have treated Gloria differently had I known what I know now.
I first met Gloria in the whirlpool room, on my wound care rotation (why physical therapists do wound care is another story!). Gloria was an older woman who had stepped on a spider, and the spider bite turned into a massive infection. Against the odds, she survived several surgeries that spared her limb, but left her with a very large open wound. And by large, I mean the largest wound I ever saw in all my years of practice.
Gloria’s wound dressings had to be changed twice a day. Over the many weeks I cared for her, I learned that Gloria had a generally positive disposition, and she had faith that her leg would heal. I don’t think she had a clear understanding about her medical condition or her wound, but I didn’t talk with her about how precarious the situation was. I assumed her physicians were having those discussions with her. I focused on managing the wound, and being a cheerleader in the face of tremendous suffering and loss. I measured the small gains: an infection-free wound bed and incremental signs of wound healing.
From this microscopic and fragmented view, we missed the narrative Gloria was trying to share with us — the narrative that led up to her death.
Had I, or her nurses and team of physicians, been practicing narrative medicine, we might have paid attention to her attempts to engage with us in a different conversation as the end of her life approached. When occasionally she said “I don’t think I’m going to make it,” we might not have countered with a cheery, “Sure you will!” And on her last day, when she said, “I don’t think I’m going to make it today,” we might have recognized it for what it was: an attempt to initiate a difficult conversation about her premonition that this was her last day, that her death was very close at hand.
Had we tapped into our empathy for Gloria’s need to tell us the story of her suffering that day, we would have learned how she was feeling, and how it differed from other days. It might not have changed her outcome; I don’t think she could have survived regardless of what we did. But it would have changed her experience of her final contact and conversations with us that day. And it might have helped me cope with the tremendous loss when Gloria died that day.
I wish I had had the skills to engage with patients like Gloria in conversations about their fears, their attempts to bring meaning to their suffering, and their premonitions about their eventual final decline and death. I was not taught any of those things in school. Thankfully, that’s changing. The art of narrative medicine is increasingly being taught in medical schools, and residency and fellowship programs increasingly incorporate some aspects of narrative medicine in their curricula and training.
More and more physicians and other clinicians are writing books and blogs about their real-life experiences with trying to heal others—the toll and the rewards, the self-doubt and failings along with triumphs and successes. They’re learning how to care for patients and protect themselves.
This makes sense, given the increasing policy emphasis on person- and family-centered care and decision making, patient-reported outcomes, and patient experience measures. It also makes sense from the perspective of our need to train additional clinicians to be able to handle the demands of our growing population of older adults nearing end of life over the coming decades. As my colleagues described in a recent post, we need to train staff to engage in conversations about advance care planning and end of life care. Empathy is a critical ingredient for these conversations, and training in narrative medicine may provide benefits for both patients and healthcare practitioners.
The author gratefully acknowledges Juliana Saracino, BA for research assistance on this post.
Franziska Rokoske