Category Archives: Narrative Medicine Research

These blog posts explore prevalent findings about illness narratives, narrative medicine, and medical humanities.

Pondering Prepositions: Medical Humanities and Narrative Medicine

Rooted in the essence of humanity, health and medicine are inherently interdisciplinary. How are these fields intertwined with others? We express this entanglement through prepositions, mumbled words that can resound with significance.

Take, for example, literature. We can consider literature in/and/of medicine. There is a prepositional choice that we can make, one that urges us to consider the angle of our approach. We can do the same with other media forms like art.

In: Medical literature is present in medical education lectures, in research publications, in patient charts. Medicine has established an entirely different language with its own terminology, one that can manifest itself as a form of literature through scientific writing. The clinical practice of medicine is a dialogic exchange, a narrative. My understanding is that this area of study is largely encompassed by the field of Narrative Medicine, one that notes the literary merit of the medical practice.

Of: Literature has long been fascinated in the practice of medicine, its accomplishments and its qualms. There have been  writings about medicine for centuries. Some are the stories of  medical practitioners like William Carlos Williams, Oliver Sacks, Danielle Ofri. And others are written about the medical sphere from afar, such as the works of Ken Kesey, Elizabeth Moon, Sinclair Lewis. These literary texts seem to be the focus of Medical Humanities, which explores medicine through a literary lens.

And: I claim that this blog explores the intersection of literature and medicine: the ‘and.’ This intersection, however, is certainly a grey area. The ‘and’ balances the two fields, literature and medicine, declaring them as separate studies equal in merit. This introduces the idea that perhaps, because these are distinct, each has something to learn from the other. Maybe scholars can develop reading, writing, and critical thinking skills by confronting the medical profession through literature. Or analyzing literature can instill in health care professionals a different kind of care and compassion. The former feels more like Medical Humanities, the latter Narrative Medicine.

Prepositions

I believe that this is the realm shared by both Medical Humanities and Narrative Medicine. I’ve found that this grey area can be largely open to interpretation, but only through dissecting the fundamental threads within can we make sense of these fields and assemble these perspectives together.

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Illness Narratives, Medical Humanities, and Narrative Medicine

For the past few months, I’ve been on a mission to understand how illness narratives fit into the broader world of academia. I’ve encountered two primary schools of thought: Medical Humanities and Narrative Medicine. By talking to a variety of scholars in both fields, I’ve been trying to decipher how these fit together and what distinguishes them from one another. This is an introductory post to these concepts; throughout a series of posts to come, I hope to share some of my ideas about each of these fields, how they intersect, and where my own explorations of illness narratives may fall.

Narrative Medicine vs. Medical Humanities

Medical Humanities is “an interdisciplinary field of humanities (literature, philosophy, ethics, history and religion), social science (anthropology, cultural studies, psychology, sociology), and the arts (literature, theater, film, and visual arts) and their application to medical education and practice.”

Narrative Medicine “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.”

Illness Narratives, as I define them, are “expressions about or around the experience of being ill.”

Loosely based on these definitions and largely based on my engagement with both fields, I’ve illustrated here my understanding of how these fields are related. There are overlaps, but there also exclusives. These evolving fields are not static but rather dynamic, shifting with the contributions of each individual.

What I’ve realized is that in the end, my study of illness narratives is not entrapped by these indefinite definitions. I can escape the boundaries of these words and instead find meaning in the margins. This isn’t an entirely satisfying conclusion, but I’m content with the realization that, for now, it is still in the works.

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Reconstructing the Past with ICU Patient Diaries

Image courtesy of Antonio Litterio under a Creative Commons license: BY-SA.

Image courtesy of Antonio Litterio: BY-SA.

In permeating across disciplines, illness narrative research attains a level of potency, one that spans the globe. Dr. Ingrid Egerod, a nurse from the University of Copenhagen, spoke on Tuesday about “ICU patient diaries and follow up in Nordic countries.” She highlighted how narrative is being used by ICU nurses to enhance care in Nordic countries.

What is unique about ICU patients is that many spend weeks at a time unconscious, and later they are unable to remember the ICU. This dark vacuum of memory can be the cause of alarm for many patients, creating friction that sparks psychological discomfort for a patient in later years.

In the Nordic countries, nurses like Ingrid Egerod aim to fill this void by creating ICU patient diaries to capture the day-to-day lives of these patients. Unlike hospital charts, these records string together ICU events to create a coherent ICU experience. These diaries then become tools to aid patients in reconstructing their time in the ICU and creating their own illness narrative.

These have had an incredible impact on many members of the ICU scene, ranging from nurses to families to patients. This task seems to renew a sense of purpose for nurses and to help families to understand the progression of medical events through story. Egerod and others have demonstrated that patient diaries decrease the occurrence of Post-Traumatic Stress Disorder in ICU patients. After patients are presented with their diaries, nurses follow-up with them  and use the diary as a guideline for conversation. These narrative activities are now being extended to include patients and families who are encouraged to use writing as a therapeutic form of expression.

It was fascinating to hear about this illness narrative research and to think about how narrative can adapt to and address the needs of the ICU unit and others. I also found it exciting to see that the idea of narrative is growing in other countries as well.

Here were some of the questions that I had, along with paraphrased answers provided by Dr. Egerod.

  • How are these ideas being received globally?

There appears to be enthusiasm for narrative and a growing appreciation for the patient experience, but especially in countries like the U.S. where nurses are often overwhelmed as it is, the obligation of ICU patient diaries can become a burden. This is definitely an obstacle, but it’s important to recognize the long-term benefits of this immediate investment; reducing psychological distress from the start can lead to less problems down the road.

  • Have there been efforts to publish these narratives so that other patients and health professionals can learn from these experiences?

Not so much, due to the intimacy of these narratives. Excerpts have been cited in journal articles, but these diaries have been primarily a resource for the immediate people involved in each narrative.

  • How do physicians play a role in the ICU patient diaries?

It seems as though physicians are more backstage for these efforts. Nurses have adopted the ICU patient diaries as something of their own, and doctors are less involved actively in the daily care.

I guess that’s what I’m trying to push again with my illness narrative research. I am glad to see that health professionals such as nurses are becoming more involved in narrative work, but I think that this is just as crucial for physicians. There may not be time for this level of engagement on each person’s part, but I believe that at least an awareness by all health professionals would make a difference.

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