Narrative Medicine: Better Doctors, Better Patients?

One of the best classes I’ve ever taught—and by “best” I mean the most interesting, engaging, and rewarding, the class I learned the most from as an instructor—was a writing course for pre-med and health sciences students. It was called “Constructions of Health in Contemporary Literature” and it contained various essays from physicians, writers, and patients about illness, healing, social justice, etc. I was so fortunate to have the chance to read these types of works with a class of future health professionals and see the way they responded to these personal stories and how their readings might inform their identities as they develop their careers.

Of course, physician-writers are hugely popular outside the classroom; the best-selling work of authors like Atul Gawande and Jerome Groopman are probably the most well known examples of this. Narrative medicine is an important topic (now more than ever, I would argue), which is why I was so pleased to come across Dr. Pauline Chen’s article on combining literature and medicine on Tara Parker-Pope’s Well blog in the New York Times.

Among other things, the article discussed how incorporating literature and writing workshops during residency can help doctors view patients with more empathy and compassion—and by extension, it can help them provide better care. It is no easy thing for the well to be able to understand what it feels like to be sick, and no insignificant thing when doctors can do this. As a patient, I am encouraged by programs that incorporate literature and medicine and as a writer I am appreciative of the value others see in studying these works.

Perhaps it is from the dual point of view that I see another strong benefit to narrative medicine beyond fostering more empathy and compassion in doctors: I think it makes us better patients, too. It is useful for me to see the other perspectives, the thoughts and fears and reflections of the people charged with healing (not curing) me. I hope it makes me more understanding and more open-minded, too.

Between writing about illness, living with it, and teaching it for a living, I’ve done my fair share of reading. Here’s a short list of some of the best examples of both narrative medicine and all-around riveting health writing I’ve found:

A Life in Medicine: A Literary Anthology, edited by Dr. Robert Coles and Randy Testa. I’ve used this book as a basis for undergrad and grad classes and have even given it as a gift. It’s a great mix of classic and contemporary pieces.

The Tyranny of the Normal: An Anthology (Literature and Medicine, Vol 2), edited by Carol C. Donley and Sheryl Buckley. An interesting combination of scholarly and personal essays and poetry on illness and disability.

Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande.

How Doctors Think, by Dr. Jerome Groopman. I loved this book so much and it made me think about so many things that I quoted it in my own book when discussing the doctor-patient relationship.

Mountains Beyond Mountains: The Quest of Paul Farmer, a Man Who Would Cure the World, by Tracy Kidder. I was originally assigned this book in graduate school, where the obsession began. It is one of my favorite books of all time, and one I recommend to students, family, and friends every chance I get.

The Spirit Catches You and You Fall Down, by Anne Fadiman. An utterly engrossing and emotional narrative about one family’s quest to cure their daughter and what happens when Western medicine and other cultural ideals and norms clash. I’ve used excerpts of this in classes and recommend it to everyone.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sontag. Every time I read it and teach it I come away with something new.

Have you enjoyed any of these titles? Have any more to suggest? I am always on the lookout for new material!

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Speaking of writing about medicine, another fantastic edition of Grand Rounds is up today at Emergiblog. Check it out!

Language and the Patient Experience: The Follow Up

I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

Tuesday Reading

Need a distraction from the financial chaos? Grand Rounds is up at Monash Medical Student. This week’s theme is “Medicine and War.”

In other places around the Internet…

Finding the right doctor. Believing knowledge is power. Do these and similar topics, like what it means to be “healthy,” sound familiar? I talk a lot about them here, so I was thrilled to see today’s NYT’s Well Blog and the Science Times, where “Decoding Your Health” compiles a series of articles and essays on these very issues. Definitely worth a read!

More on language, medicine, and the words we choose to follow…