Teaching the Rx Narrative: Story as Medicine

Marie Ennis-O’Connor

Road Map

Introductions and expectations

What is story? Storytelling exercise

Listening and empathy Medicine as a storytelling activity

The illness narrative

Story

campfire

Only humans tell stories. Story sets us apart. For humans, story is like gravity: a field of force that surrounds us and influences all of our movements. But, like gravity, story is so omnipresent that we are hardly aware of how it shapes our lives.

story

makes us

human

PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson

Your Brain On Story

“We need to move away from the perception that social skills and

better communication

are a kind of optional extra for doctors. A good

bedside manner is simply good medicine”.

Nirmal Joshi MD, Doctor, Shut Up and Listen, NY Times, Jan 4, 2015.

Why do physicians interrupt?

Why do physicians interrupt?

“ Listening to another person is an act of profound humanity; it is an act of profound humility.”

Sayantani DasGupta MD, Narrative Medicine, Narrative Humility.

Arthur Kleinman MD calls it, a stance of “empathetic witnessing.”

“My role as a doctor is to listen, deeply and compassionately, to ‘be with’ the other person in their suffering.” Jonathon Tomlinson, Forgiveness, narratives and listening. A Better NHS

“Long before doctors had anything of interest in their black bags – no MRIs, no lab tests, no all body CAT scans – what they had was the ability to show up, what they had was the ability to listen, and bear witness to someone’s life, death, illness, suffering, and everything else that comes in between.”

Sayantani DasGupta MD

“We hear a lot these days about personalized medicine, about drugs and treatments that can be tailored to specific genomic and epigenetic markers. But you know what people really long for: personal medicine, not personalized medicine. They crave a human connection. Not just care, but caring.” André Picard convocation speech delivered on May 14, 2015, to the graduating class of medical doctors at the University of Manitoba.

Healing

Product A • Feature 1

• Feature 2

• Feature 3

Greaves D. The Healing tradition: reviving the soul of Western medicine.

“We live in a post-modern society where a technocratic approach to medicine is no longer considered sufficient or desirable. Twenty-first century patients are looking for person-centred care: they want to be listened to and to have a dialogue with their doctor, to be healed rather than cured.”

“The foundation of healing starts with reassurance that they have been seen and therefore valued and appreciated for the human that they are beyond the disease”. Adrienne Boissy MD. Staring Down the Barrel: Patient Narrative. How listening to patient narrative improves clinical care.

“My desire to be a physician had a lot to do with that sense of medicine as a ministry of healing, not just a science. And not even just a science and an art, but also a calling, also a ministry.”

Abraham Verghese MD

"To love the sick, each and every one of them, as if they were our own." I always think, when I hear that "they are our own," that there isn't anything that separates you and I from the people we are taking care of in the hospital. It is the same fabric, the same humankind.”

Abraham Verghese MD

Empathy

The psychological identification with

or vicarious experiencing of the

feelings, thoughts, or attitudes of another.

Clinical empathy is the ability to stand in a patient's shoes and to convey an understanding of the patient's situation as well as the desire to help.

Empathy is a multistep process whereby the doctor's awareness of the patient's concerns produces a sequence of emotional engagement, compassion, and an urge to help the patient.

Benbasset, J., Baumal, R. What is empathy, and how can it be promoted during clinical clerkships? Academic Medicine. 2004.

Why Empathy • Higher patient satisfaction ratings. (Riess, 2012)

• Lower risk of malpractice suits. Over 80% of malpractice claims are the result of communication failures. (Hickson, 2002; Levinson, 2004)

• Patients who experience empathic care have better medical outcomes. (Hojat, 2011; Rakel, 2009; Kaptchuck, 2008)

• Increased adherence to treatment recommendations. (Halpern, 2010)

• Enhanced empathic care and physician well-being are highly correlated. (Shanafelt, 2005)

Empathy (1) makes patients more forthcoming about their symptoms and concerns, thus, facilitating medical information gathering, which, in turn, yields more accurate diagnosis and better care;

(2) helps patients regain autonomy and participate in their therapy by increasing their self-efficacy; and

(3) leads to therapeutic interactions that directly affect patient recovery.

Halpern J. From Detached Concern to Empathy: Humanizing Medical Practice. New York, NY: Oxford University Press; 2001

Diabetes Study

• Assessed the empathy levels of 29 family physicians using a standardized scale, then followed 891 of their diabetic patients for three years.

• The patients of the doctors who'd scored high on the empathy scale were far more successful at managing their blood sugar levels than the other patients.

(Hojat et al., 2011)

Roadblocks

"Doctors are explainaholics. Our answer to distress is more information, that if a patient just understood it better, they would come around.“

James A. Tulsky MD, “Oncotalk"

Obstacles

• Demanding work environment with heavy workloads (Cash and Holland 1998).

• Little importance attached to empathy (Greenberg et al, 1999).

• Cynicism (Testerman et al, 1996).

• Insufficient training and education (Clark, 2001).

“Students undergo a conversion in the third year of medical school - not pre-clinical to clinical, but pre-cynical to cynical. What we need in medical schools is not to teach empathy, as much as to preserve it - the process of learning huge volumes of information about disease, of learning a specialized language, can ironically make one lose sight of the patient one came to serve; empathy can be replaced by cynicism.”

Abraham Verghese MD

“Physicians have been taught in medical school that they must keep the patient at a distance because there isn’t time or because if the doctor becomes involved in the patient’s predicament, the emotional burden will be too great.

But beyond that, the emotional burden of avoiding the patient may be much harder on the doctor than he imagines.

A doctor’s job would be so much more interesting and satisfying if he simply let himself plunge into the patient, if he could lose his own fear of falling.”

“Being emotionally detached or well defended is now contraindicated. We need to stay in touch with our emotions, because without them, we risk becoming the kind of doctors who go down the hall to see “the gallbladder in room 2.”

Divinsky, Miriam. “Stories for Life: Introduction to Narrative Medicine.” Canadian Family Physician 53.2 (2007).

Can we teach empathy?

“I speak of "practicing," rather than "having," empathy because I want to focus on the professional skill component, rather than the natural endowment (i.e. more or less hardwired) component.”

Jack Coulehan MD

When people learned that empathy was a skill that could be improved — as opposed to a fixed personality trait — they engaged in more effort to experience empathy.

Schumann, Karina; Zaki, Jamil; Dweck, Carol S. Addressing the empathy deficit: Beliefs about the malleability of empathy predict effortful responses when empathy is challenging.Journal of Personality and Social Psychology, Vol 107(3), Sep 2014, 475-493

“Empathy isn't just something that happens to us - a meteor shower of synapses firing across the brain - it's also a choice we make: to pay attention, to extend ourselves.”

Story

“Story becomes the ground that

patients and healthcare

professionals travel

together.”

Jay Baruch MD

medicine as

story

“Case presentations are highly conventional narratives; strictly ordered - their language narrowly descriptive and toneless in order to sort out the patient’s subjective report of discomfort from the physician’s more objective view of the case. This flatness aids the emotional detachment felt necessary to the care of the ill.”

“The case history was invented by Hippocrates. Since then medical practice has been straitjacketed by its artificiality, to the detriment of the patient's own narrative. The traditional case history stifles the patient's own narrative.”

Jeffrey Aronson MD Autopathography: the patient's tale. BMJ 2000.

“To restore the human subject at the centre—the suffering, afflicted, fighting, human subject—we must deepen a case history to a narrative or tale.”

Oliver Sacks MD

“Medicine begins with storytelling. Patients tells stories to describe illness; Doctors tell stories to understand it.”

Dr Siddhartha Mukherjee

Medicine As Story

“Illness complaints are what patients bring to the doctor. Disease - what doctors have been trained to see however, is what the doctor creates in the recasting of illness. The doctor reconfigures the patient’s illness within a particular taxonomy “ a disease nosology, that creates a new diagnostic entity, an “it” – the disease.”

Arthur Kleinman

“The story of illness that trumps all others in the modern period is the medical narrative. The story told by the physician becomes the one against which others are ultimately judged.”

Arthur Frank, The Wounded Storyteller.

“When you lose that story, the patient becomes a collection of somewhat unconnected data points.”

Nick van Terheyden MD

“Health care is supposed to build on the story with each contact, but if we don’t know the story, each contact becomes a closed episode of its own, disconnected from every other episode. Fragmentation results as the outcome of a nonstoried approach to health care.”

Lewis Mehl-Madrona, M.D., Ph.D. Narrative Medicine: The Use of History and Story in the Healing Process

Conventional medical training teaches students to view medicine as a science and the doctor as an impartial investigator who builds differential diagnoses as if they were scientific theories. This approach is based on the somewhat tenuous assumption that diagnostic decision making follows an identical protocol to scientific inquiry—in other words, that the discovery of “facts” about a patient’s illness is equivalent to the discovery of new scientific truths about the universe.

Greenhalgh T. Narrative based medicine in an evidence based world. BMJ : British Medical Journal. 1999;318(7179):323-325.

“Talking to the patient more often than not provides the essential clues to making a diagnosis. It is our oldest diagnostic tool.

And as it turns out, it is one of the most reliable. The great majority of medical diagnoses are made on the basis of the patient’s story alone. None of our high-tech tests has such a high batting average.

Dr Lisa Sanders

“The ability to acknowledge, absorb, interpret, and act on

the stories and plights of others.”

Rita Charon MD

Narrative Listening Listening with, not to the patient’s story.

To • Instrumental

• Acts upon the patient

• Physician driven

With

• Mutuality

• Collaboration

• Patient driven

Narrative Medicine Approach

• Listening to the story of the illness – not just the disease.

• Sensitivity for the context of the illness experience and the patient-centered perspective.

• Establishing a diagnosis in an individual context, instead of merely in the context of a systematic description of the disease.

• Being willing to bear witness to the patient's suffering.

To “take a history” vs to “elicit a history.

"Building" a history rather than "taking" one.

Spontaneous talking time at start of consultation in outpatient clinic: cohort study.

A study about spontaneous talking time of patients in general practice points out that two minutes of listening is enough for 80% of the patients to recount their concerns. Out of 335 patients only 7 needed more than 5 minutes. The physicians of the study were trained in active listening, and the study cohort consisted of many difficult patients with complex medical histories.

Langewitz W, Denz M, Keller A, Kiss A, Rüttimann S, Wössmer B. BMJ. 2002 Sep 28; 325(7366):682-3

How might we harness and codify the power of story in healthcare education and practice to improve the value our healthcare system provides, and work toward a vibrant Culture of Health?

Start each patient visit with a simple exercise:

• Sit face to face without a clipboard or computer. For the first two minutes, don’t write anything down. Just be present for your patient.

• Listen for context: While your patient is talking, listen for clues to challenges in the patient’s life that affects his or her care.

Patients must be given the opportunity to tell the story of their unique illness experiences. Knowing the patient as a person allows the health professional to understand elements that are crucial to the patient's adherence: beliefs, attitudes, subjective norms, cultural context, social supports, and emotional health challenges.

Martin LR, Williams SL, Haskard KB, DiMatteo MR. The challenge of patient adherence.

Therapeutics and Clinical Risk Management. 2005;1(3):189-199.

the illness

narrative

Defining Narrative

• “Narrative” is bigger than story.

• A narrative includes stories within stories, all of which help us make sense of our complex lives.

• Narrative is constantly changing.

• Narrative is the web of which each story told, is one strand.

“Life is storied and narrative is the mode in which

meaning and values are stored.”

- Lewis Mehl-Madrona MD -

“Narrative provides meaning, context, perspective for the patient's predicament. It defines how, why, and what way he or she is ill. It offers, in short, a possibility of understanding which cannot be arrived at by any other means.”

Greenhalgh T, Hurwitz B. Why study narrative? Narrative based medicine: dialogue and discourse in clinical practice.

Stories are “antibodies against

illness and pain.”

Patient Physician Physician-Patient Meta-Narratives

1. Patient Narrative Why do patients tell stories? • To make sense of our illness. • To orient ourselves in the world of illness. • To join with others through a common bond of

illness. • To recover the voice that illness takes away.

“Narratives of illness can provide a corrective to biomedicine’s objectification of the body and, instead, embody a human subject with agency and voice.”

Catherine Kohler Riessman. Illness Narratives: Positioned Identities

1. The restitution narrative

The illness is seen as transitory It is all about the body returning to its former image of itself, before illness.

2. The chaos narrative

Life will never get better; no one is in control.

3. The quest narrative

Illness is the occasion of a journey that becomes a quest.

1. Restitution Narrative

2. Chaos Narrative

“This illness narrative feels like being in a kayak in a class five rapid. While you are going through the rapids, time and place shift so rapidly, up and down, right and left transpose so often, that one truly feels inside a vortex, the way out of which is entirely unknown in any one moment.”

Kaethe Weingarten. Making sense of illness narratives: Braiding theory, practice and the embodied life. Dulwich Centre Publications, 2001

“Some of my sickest patients tell me that they have become isolated and alone because their illnesses have become so overwhelming that they have nothing left to talk about and they don’t want to burden their friends, ‘who have troubles enough of their own’. Friends may be poor listeners because ‘they want to steer the person back to being the person they were before.”

Jonathan Tomlinson, Forgiveness, narratives and listening. A Better NHS.

“To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism suffering and unremitting pain”.

Arthur Frank

3. Quest Narrative

• Feature 1

• Feature 2

• Feature 3

• A story that revolves around an adventure, or a journey (traveling expedition).

• Reluctant hero answers the call.

• Epic scope (a lot is at stake for protagonist).

• Obstacles must be overcome.

• Something gained (new qualities of self; insights) along the journey.

All three narratives intertwine

“In most stories told by any deeply ill person; few individual stories have only one skeleton. Often in a particular story, at a particular time, one narrative type is foreground and the others are back-ground. Shifts in foreground and background map changes in illness experience.”

Arthur Frank The Wounded Storyteller.

2. Physician Narrative

• Autobiographical accounts about life as a physician and caring for those who are sick.

• A special genre constitutes stories about physicians as patients.

• Reflective writing.

“I was fascinated by my patients there, cared for them deeply, and felt something of a mission to tell their stories — stories of situations virtually unknown, almost unimaginable, to the general public and, indeed, to many of my colleagues. I had discovered my vocation, and this I pursued doggedly, single-mindedly, with little encouragement from my colleagues. Almost unconsciously, I became a storyteller at a time when medical narrative was almost extinct.”

“If we wish to know about a man, we ask 'what is his story--his real, inmost story?'--for each of us is a biography, a story. Each of us is a singular narrative, which is constructed, continually, unconsciously, by, through, and in us. Biologically, physiologically, we are not so different from each other; historically, as narratives--we are each of us unique.” Oliver Sacks MD, The Man Who Mistook His Wife for a Hat and Other Clinical Tales

Atul Gawande, The New Yorker, 09/14/2015

“We do such a good job of using social media and the Internet to tell people what we know, but we do a lousy job of telling people who we are. … And telling people who we are has become really important. When I set out to write these stories, I set out to tell our patients who we are, what it feels like on the other side of the stethoscope.”

“Living this reality, I have come to realize that illness doesn’t necessarily make us “less”. Quite the opposite. It can give us perspective, depth, compassion, empathy, wisdom, resiliency and strength. It makes me a better person, and a better doctor.” Anne C. Brewster, MD - Massachusetts General Hospital. diagnosed with Multiple Sclerosis, 2001. Boundary Issues: A Doctor With MS Confides In Her Patient

3. Physician-Patient Narrative

“The unfolding and interwoven story between health care professionals and patients” (Kalitzkus & Matthiessen 2009). “Seeing patients…hearing them tell their stories, telling our version, and merging the two…is a narrative act and constitutes the essence of the clinical encounter.” (Jeffrey Borkan).

“The distance between the parallel narratives authored by patients and doctors can be as wide as the Arctic flats or as narrow as a sun’s lone ray. Yet it always marks a third space, one that belongs to neither but is shaped by both. The space between them can be filled with shared meaning.”

Kate Scannell. Writing for Our Lives: Physician Narratives and Medical Practice. Ann Intern Med. 2002;137:779-781.

Space In Between

The relationship of storytelling is reciprocal and the story space is for both the teller who shares the illness story, constructs and knows the meaning of illness, as well as for the listener who embraces the story. The story not only becomes a point of access for meaning for the listener, recognition and understanding of illness meaning with its accompanying loss, pain and suffering, but it becomes an opportunity for transformation.

Jane LaChance

“Sometimes we can help our patients to re-write their stories. For instance, we might be able to help people with chronic illness to move from a chaos story [of fear and powerlessness] to a transcendent story [of hope], allowing them to see themselves as people who have a manageable disease, not as people who are in the process of dying.”

Jeffrey Borkan

Helping Patients Construct Better Narratives Discussion Points 1. What is a “better” story?

2. How might you help patient create a new story?

3. What are the inherent risks?

4. Meta Narrative

“Illness is considered a story being developed in a big story of a patient life” (Dr Seiji Saito, 2003)

Our illness takes place in a sociocultural context which influences our view of illness and of the sick body. There are larger socio-political power structures that marginalize certain sorts of stories and privilege others.

“Meaning is significant because it not only reflects an individual’s interpretation but also directs behavior, attitude and expectations. Therefore, meaning impacts the care and management of someone’s illness.”

“How many times have we counseled patients to quit smoking or lose weight? It wasn’t until I listened, without interrupting, that I could really hear what smoking or obesity meant to patients. One patient—and she was far from the only one—told me that smoking was one of her best friends. She wasn’t self-destructive—she was lonely. Quitting smoking might be a triumph of will, but it would also be felt as loss. Another patient told me that her large size was a comfort to her; when curled up with a book or even sitting in a theatre or airplane, she felt she was hugging herself, caring for herself in a way no one else did or could.”

Miriam Divinsky, “Stories for Life: Introduction to Narrative Medicine.”Canadian Family Physician 53.2 (2007))

To sum up….

• For patients - narrative allows for the construction of meaning; addresses existential issues of suffering.

• Diagnostic – narrative provides rich source of clues.

• Therapeutic – narrative is a framework for holistic approach to treatment.

• Narrative provides context for individual, patient-specific meaning of an illness.

• Narrative encourages empathy.

• Promotes understanding between clinician and patient.

By immersing themselves in emotional accounts of illness, students will expand their capacity to adopt the patient's perspective during clinical work.

DasGupta S, Charon R. Personal illness narratives: using reflective writing to teach empathy. Acad Med. 2004;79:351–6

Pedagogic – Stories are amore memorable way for medical students to learn – grounded in experience; encourages reflection.

“Medicine has shifted its focus to getting to know and treat a disease instead of getting to know and treat the person with the disease.”

Oliver Sacks

“Their story, yours and mine -- it’s what we all carry with us on this trip we take, and we owe it to each other to respect our stories and learn from them.”

William Carlos Williams. Poet and Physician

“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head. Often the best part of your work will have nothing to do with powders or potions …”

Sir William Osler

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