Narrative Medicine (NM) seeks to help patients and family members by engaging their stories of illness and treatment in the context of their life history, values, and identity. NM sessions encourage patients to share their stories through guided conversations and personal writing. Attentive listening to the patient's narrative is at the heart of NM visits. Patients are encouraged to reflect on their sources of strength, insights drawn from their experience of illness and treatment, and hopes for the future. They may also share their concerns and sources of conflict during treatment. The format of the NM visit is flexible, providing space and opportunity for patients to focus on any topic of concern for them. Vieda Skultans states that “Narratives facilitate the search for, and construction of, new meanings in situations where the old meanings no longer work.”1 Patients may begin to discover new meanings and sense of identity as they explore their own narratives, encouraging resilience and improved quality of life.2 These experiences may be shared in conversations with a NM practitioner or written in a patient journal and discussed later.
Telling the story encourages patients to sort through feelings and thoughts about their condition. In some cases, patients who reflect on their condition will discover new insights about themselves relative to their illness and treatment. They may also recall questions or issues they forgot to raise in previous interactions with other health care providers. They may find new questions, new answers, and new meanings as they hear their own story and share it with another person who listens carefully. Rita Charon notes the reciprocal process of telling and hearing a story of illness, a “giving and receiving of accounts of self,” is at the heart of health care.3
NM began to emerge as a discipline in the late twentieth century. Charon states that “narrative medicine began as a rigorous intellectual and clinical discipline to fortify healthcare with the capacity to skillfully receive the accounts persons give of themselves—to recognize, absorb, interpret, and be moved to action by the stories of others.” She explains that NM proceeded from a group of scholars and clinicians at Columbia University in New York who “gathered at the millennium.” They believed “the nature of the clinical work itself would be transformed if narrative skills and methods could become part of the fabric of clinical thought and care.”4 Tricia Greenhalgh and Brian Hurwitz of King's College, London, stated in 1998 that “Narrative provides meaning, context and perspective for the patient's predicament.” Greenhalgh and Hurwitz also distinguish NM from the limitations of modern medical practice: “At its most arid, modern medicine lacks a metric for existential qualities such as inner hurt, despair, hope, grief, and moral pain which frequently accompany, and often indeed constitute, the illnesses from which people suffer.”5
NM is relatively new, a development of the past 20 years or so, but also very old. Lewis Mehl-Madrona draws on his Native American ancestry to consider the ancient use of story in healing. He notes that “within the Lakota and Cherokee traditions with which I am most familiar, the healer diagnoses the problem through careful listening and rapport building. The healer teases out the story before a ceremony is ever considered.”6 He also states “illness makes sense within the overall stories and contexts of a person's life. This is not a new idea. Indigenous cultures have believed this since long before recorded history.” Healing must therefore provide “an individualized solution” for the person who needs treatment.7
Narrative exercises such as reflective writing on emotional or serious topics have shown potential health benefits for patients and other study participants. Bourassa, Allen, Mehl, and Sbarra found that narrative expressive writing decreased heart rate and increased heart variability but did not affect blood pressure in a sample of adults who recently experienced marital separation.8 A variety of other studies have shown health benefits of expressive writing, including decreased pain, improved health status or well-being, increased vigor, better sleep quality, and decreased doctor-visit rates. Some of these studies show benefits of expressive writing in certain areas of study but not in others.9, 10, 11, 12, 13 Health benefits for patients may well be gained in NM conversations that involve the same kinds of reflections found in expressive writing exercises. More research needs to be done in terms of immediate and long-term benefits for patients who participate in NM visits and writing activities.
Narrative competence is an important qualification for anyone who serves as an NM practitioner. Charon (describing NM in the work of physicians) defines narrative competence as “the set of skills required to recognize, absorb, interpret, and be moved by the stories one hears or reads.” Sharing the patient's narrative may also allow a subject-to-subject contact of the patient and NM practitioner that encourages their therapeutic alliance. The NM practitioner's respect for the patient's worth and concern for the patient may be expressed through attentive listening that “makes room” for the teller of the story, the patient.14 Narrative competence may also allow a deeper understanding of the patient's story and the disease itself in terms of an unfolding narrative with characters, plot, symbols, meaning, conflict, and resolution of conflict.
Advanced heart failure patients may encounter physical and mental challenges to their personal identity and sense of self. A patient who is used to working hard or being active at home may experience decreasing energy and stamina. A patient who is used to managing the tasks of daily living may have difficulty with the most basic activities of life and need help. Some patients may become angry, discouraged, or fearful. Patients who were confident about their future may be unsure about what comes next or what will happen to them. They may fear loss of independence and autonomy. Relationships with loved ones and caregivers may be strained. Patients’ motivation for treatment may be challenged by the prospect of prolonged hospitalizations, lengthy rehabilitation, and uncertain outcomes or timelines of recovery. Some ventricular assist device (VAD) patients may be disappointed they were unable to receive a heart transplant.
Implantation of the VAD itself can challenge patients’ body image and physical identity. The lifestyle of VAD patients is restricted and changed in many ways (e.g., limitations on autonomy such as no swimming; special instructions for showering and dressing changes). They may require supportive home care for maintenance of the VAD along with regular encouragement, patience, and assistance from family and friends. These limitations and changes can challenge patients’ sense of identity and independence.
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