Be Patient, Listen to your Patient: A Reflection on the Difficulties of Describing a Disease by Suzanne Edison

   Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem " The Body Lives Its Undoing " appears in the Spring 2018 Intima.

Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

In Rachel Betesh’s poem “Admission Assessment” that appeared in the Fall 2014 Intima, the doctor observes a patient, finding the words to describe both his condition and her understanding of his experiences. She listens well, using precise language. Her first observation is visual, she sees his posture, but almost immediately that awareness is paired with hearing his breathing. She says:

 so measured these breaths break: shallow

            like rainwater with nowhere to settle:

            he parcels air; he can’t give it away.

 

Breath as a parcel, a package that can’t be given away. Breath is precious and difficult simultaneously. As a reader I am pulled into a field of empathy; the doctor trying to understand her experience of the man. She listens acutely to his “ragged song of breathing.” and “the natural sweetness of the body / reduced to laboring: an immeasurable effort,…”

The doctor listens to what is being said as well as what is not being said. She hears his breathing and his words. He “cradles” his hand, the size of a grapefruit, and says, “now it’s everyplace, / and the air seeps and sings out, out without measure.”

She thinks his words are the most salient reason for hospitalization and should be in her assessment: “now it’s everyplace.”

The doctor is aware that not everything can be seen, that this hand is the most visible aspect of his cancer; but she knows it is in his kidneys as well.

I am reminded of William Osler’s words of wisdom to his medical students at Johns Hopkins, “Listen to your patient, he is telling you the diagnosis.”

What can’t be seen is often true in autoimmune diseases as well. Listening to a patient describe the experience of his or her body might help a doctor find a diagnosis, but not always.  My poem, “The Body Lives Its Undoing” (Spring 2018), speaks to this experience. Initially I use the words koyaanisqatsi and uggianaqtu from Native people’s languages that speak directly to a “life out of balance,” to the body “behaving strangely.” Then, I try to enact the feelings of the patient through the sounds of words: cawing, cacophony, clattering; hard ‘c’ sounds that cut, which lead to the image of chaos.

How to let others know the internal feeling of an autoimmune disease.  Not only the sounds of feelings, but in images such as “cascading through flames / joints and muscles dragging like a loose muffler on asphalt” that try to portray the feelings of exhaustion and inflammation that come with most autoimmune diseases.

The patient in my poem wants to find balance, knows she is “listing” in a “turbulent sea” with disease, but wants to navigate it with “…my hand      on the tiller.”

Listening with eyes, ears and an open heart and mind is what most patients want and need, even if there is no definitive diagnosis, treatment or cure. Hearing their words and giving attention creates empathy, which goes a long way towards healing and helps the patient deal with the ups and downs of a disease.


Suzanne Edison MA, MFA, writes most often about the intersection of illness, healing, medicine and art. She has a child living with Juvenile Myositis. Her chapbook, The Moth Eaten World, was published by Finishing Line Press. She has been awarded grants from Artist Trust; Seattle City Artists, and 4Culture of King County, Seattle. Poems are forthcoming in About Place Journal; Other poetry can be found in: JAMA; SWWIM; What Rough Beast; Bombay Gin; The Naugatuck River Review; The Ekphrastic Review; and in several anthologies including The Healing Art of Writing, Volume One. She is a board member of the Cure JM Foundation and teaches writing workshops at Seattle Children’s Hospital and Richard Hugo House in Seattle. www.seedison.com. Her poem "The Body Lives Its Undoing" appears in the Spring 2018 Intima.

 

We Need More Stories From Young Patients by Kelley Yuan

   Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. Her paper entitled " Stories from Kids: The Unheard Voices of Pediatric Patients " appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

Thousands upon thousands of patient narratives. Remember the one from the eleven year old? Me neither.

We need more stories from young patients. They experience illness and emotions just as exquisitely as adults, if not more so. From their accounts we stand to learn a great deal about pain, hope and resilience. My piece, Stories from Kids: The Unheard Voices of Pediatric Patients, represents a small fraction of the many younger voices that narrative medicine has overlooked.

A great example of seeking youth voices is Ali Grzywna’s work, Anorexia Narratives: Stories of Illness & Healing. The accounts she gathered from anorexic teens and adults reveal how anorexia gave them a sense of control, a coping mechanism for other stressors, or a form of identity. Notably, she featured teen voices and the teen experience.

Based on this understanding of the underlying thought processes, therapy has evolved to treat anorexia. Instead of casting off the anorexic identity, patients learn to reshape the narrative to change their behavior—learning to select the healthy voice over the anorexic voice, instead of muting the anorexic voice altogether. Teen stories spurred progress.

Our current understanding of how children and adolescents interpret illness is dreadfully narrow, especially given the recent rise in juvenile autoimmune diseases and adolescent mental health issues. Without the youth perspective, our search for better treatments remains incomplete. The more we seek their stories, the more we can uncover to help these young minds and bodies heal.


Kelley Yuan will begin her studies at Sidney Kimmel Medical College in 2018 as part of the Penn State/SKMC combined BS/MD program. She studies illustration and fences épée when she should be revising for exams. Her work seeks to capture the rare, light-hearted moments in a field filled with pain, fear, and tough decisions. Her paper entitled "Stories from Kids: The Unheard Voices of Pediatric Patients" appears in the Spring 2018 Intima: A Journal of Narrative Medicine.

I Lost a Patient Last Week by Carolyn Welch

   Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem  "Relapse " is in the Spring 2018 Intima: A Journal of Narrative Medicine

Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

I lost a patient last week. This is not unexpected in the world of family practice. I have lost countless patients.  During most of my career in pediatric intensive care, however, I lost them dramatically. They departed with fight and drama, chest compressions and epinephrine, and intensity. This patient left quietly, succumbing to congestive heart failure.  He came in every week or two with waterlogged ankles and lungs when he forgot to take his meds.  He missed his wife. He lingered to talk. His going was like the tide shifting in Ron Lands' poem “Listen to the Ocean.” Some other shore was calling him.

There are moments when we notice the breath is like the ocean rising and falling or like Lands' “moonlight floating on the water.” My own daughter’s battle with schizophrenia is teaching me the tending of good days, the collecting of moments.

Last summer, as I watered the garden, a hummingbird flew close, dipped in and out of the spray—his thirst and my offering meeting there on a hot uneventful day in July. Diana calls on good days between relapses. Lands' patient or father or mother labors to breathe until reminded of the light and the water.  Waves bring what they have and take what they find.  Lands' voice eases his listener from one moment to the next.

My patient’s death leaves a gap in the schedule, an unfilled prescription, a message from his son. And we go on. This smallness of death is part of its tragedy to those of us working close to it, but also when it visits our lives. The room get cleaned, the bills arrive, the dogs whimper for their supper.  Some of us write poems in an effort to translate our experience and to tend to these moments of being.


Carolyn Welch worked for many years as a pediatric intensive care nurse and currently works as a family nurse practitioner.  She has an MFA from the Bennington Writing Seminars.  Carolyn’s poetry and fiction have appeared in Gulf Coast, Poet Lore, Sundog, Tar River Poetry, Conduit, Connecticut River Review, High Desert Journal, The Southeast Review, Zone 3, The Minnesota Review, American Journal of Nursing and other literary journals. Her poetry collection, The Garden of Fragile Being, is forthcoming from Finishing Line Press.  Her poem "Relapse" is in the Spring 2018 Intima: A Journal of Narrative Medicine

 

 

Life and Death in the ER: What's Real, What's Fiction? by Carol Scott Connor

   Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story  "After Midnight"  is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.


Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Life and Death in the ER: What's Real and What's Fiction? by Carol EH Scott-Conner MD PhD

 Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story  "After Midnight"  pays homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. Her story "After Midnight" pays homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

Readers of my piece "After Midnight" often ask me, “What happened to the cop?”

I answer, “It’s fiction. There never was any cop.” But the truth is more complex than that.

There were patients very similar to this during my medical school and residency years. From those memories I can say with confidence that although the piece ends with the cop about to arrive, alive, in the Recovery room, he almost certainly would not have survived to leave the hospital. As subsequent decades passed, we became more facile in resuscitation, better attuned to the factors that predict a successful outcome. In that time, at that place, we simply did everything we could to fight for life.

As you may have guessed, the piece is firmly rooted in my own experience as a wide-eyed medical student. Originally destined for a career in the cerebral specialty of cardiology, I became a convert to surgery after a night when the team (at least temporarily) cheated death and everything seemed possible. When the swoosh of the dark wings of death could be heard, and we seemed to be able to beat that old carrion-bird back into the darkness. And the night ended with a trip across the roof to start rounds.

A far more realistic and nuanced view is presented by Anna Belc in “Getting to Know Dying.” She writes of the early recognition of imminent death in those who are in the zone of criticality. She speaks of anticipating death so as to better be able to prevent it – for example, for a patient at risk of bleeding out, start two large-bore IV’s.

She also speaks of the difficulty preparing the survivors, the family. And, implicit in all of this, is the personal toll on the healthcare team. Those who deliberately choose to work in the zone where life and death intersect are, indeed, very special people.


Carol Scott-Conner is Professor Emeritus of Surgery at the University of Iowa Carver College of Medicine. She writes memoir in the form of fiction, exploring the world of women in surgery. Her stories have been published in multiple literary journals ranging from “The Healing Muse” through “North Dakota Quarterly,” and nominated for a Pushcart Prize. A collection of her short stories was published as “A Few Small Moments.” She is past editor-in-chief of “The Examined Life Journal: A Literary Journal of the Carver College of Medicine” and currently serves as its fiction editor. "After Midnight" is homage to the night shift, when everything extraneous seems to fade away and only life and death remain.

A Reflection on Hands—in Art, in Medicine by Pamela Hart

  Pamela Hart is writer in residence at the Katonah Museum of Art where she teaches and manages the Museum’s Thinking Through the Arts program. Her poem " Dorothy's Hands"  is in the Spring 2018  Intima: A Journal of Narrative Medicine

Pamela Hart is writer in residence at the Katonah Museum of Art where she teaches and manages the Museum’s Thinking Through the Arts program. Her poem "Dorothy's Hands" is in the Spring 2018 Intima: A Journal of Narrative Medicine

Field Notes on Hands: A Reflection by the writer of the poem "Dorothy's Hands" on Meagan Wu’s artwork titled "The Surgical Stage" in the Fall 2017 Intima

Hands are among the most expressive parts of the body, connected as they are with gestures of tenderness and violence. They caress and slap. They hold instruments, surgical or musical. They cradle weapons. Hands signal affection, distrust, anger.

They are conduits for ideas traveling from brain to language. They articulate the gap between thought and word. Before speech, hands gave shape to hunger and fear. They warn of danger. Handprints on cave walls are signatures or ancient algorithms linking past to future.

Hands mend wounds. Translucent hands hover like birds over an unseen patient, light radiating from the center of the image, while all the hands weave back and forth stitching skin to skin.

Heart line, head line, relationship line. Hands can be read like poems. Decipher the line on a palm to understand your life. What about memory lines. I think of my father’s hands struggling to attach dry fly to tippet. I remember stroking my mother’s veiny hands in the hospital as she died. My hands have cupped fireflies and embraced cigarettes. They plunged into the Sound on summer nights, pushing into dark water as plankton streamed tendrils of light through my fingers.

Hands give and take. I am here, say the hands. Look and listen.


Pamela Hart is writer in residence at the Katonah Museum of Art where she teaches and manages the Museum’s Thinking Through the Arts program. Rowan Ricardo Phillips selected her book, Mothers Over Nangarhar, for the 2017 Kathryn A. Morton Prize; it will be published in 2019 by Sarabande Books. She was awarded a National Endowment for the Arts poetry fellowship. She received the Brian Turner Literary Arts prize and her poems have been published in the Southern Humanities Review, Bellevue Literary Review and elsewhere. Toadlily Press published her chapbook, The End of the Body. She is poetry editor for the Afghan Women’s Writing Project and for As You Were: The Military Review. Her poem "Dorothy's Hands" is in the Spring 2018 Intima: A Journal of Narrative Medicine

What Color is Your Stethoscope? A Reflection on How Art and Colors Affect Us as Caregivers by Alice Wang

 Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Her artwork " Beyond Blue " appears in the Spring 2018 Intima.

Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.

In her Field Notes essay “The Lady in Pink” (Spring 2013 Intima), Anne-Laure Talbot writes of a formative patient encounter she had as a medical student. She meets a delightful elderly woman dressed in a bright pink sweater, who carries with her a known diagnosis of dementia.

Talbot’s preconceptions of dementia are challenged by this woman’s personable and pleasant demeanor, by her affectionate and smiling engagement. The writer ends with a moving statement on how this encounter impacted her understanding of illness as a caregiver and empathetic individual.

This reflective essay has inspired me to think more deeply about the various facets of the illness experience, from the patient’s clinical presentation to the clinician’s worldview and biases.

Color blends the boundaries between art and medicine, serving as a fundamental element of both practices. The juxtaposition of the patient’s pink sweater with Talbot’s white coat in “The Lady in Pink” creates a vivid image that captures the dynamic of the characters and the relationship between the two. My studio art piece “Beyond Blue” (Spring 2018 Intima) similarly reflects on the ways color shapes health narratives, though we may not consciously recognize them. Inspired by Joan Didion’s memoir Blue Nights and a patient I met in clinic, this drawing seeks to tell a story through the emotional, individual, and cultural meaning embodied in color and aesthetic. I attribute my sensitivity to color to my training as an artist, just one way medical humanities have helped me become a careful and connected observer of others.

  "Beyond Blue" by Alice Wang. Spring 2018 Intima: A Journal of Narrative Medicine

"Beyond Blue" by Alice Wang. Spring 2018 Intima: A Journal of Narrative Medicine

Whether manifested in clothing and medical garb or used in the process of diagnosis, color is another avenue through which illness narratives can be conveyed and understood. By reflecting on the stories that surround us, especially those we have the privilege of shaping, we as clinicians may begin to see the humanism that lies in the details, in the colors and sentiments not conveyed through a textbook diagnosis.

 

 


Alice Wang is a third-year undergraduate student at Stanford University studying Materials Science & Engineering. She is interested in the importance of interpersonal narratives in both art and medicine, and seeks to better understand the healing potential of narrative medicine. Alice enjoys portrait drawing and her artwork has been exhibited in student exhibitions at the Museum of Contemporary Art San Diego and the San Diego Museum of Art. She is involved in biomaterials research for regenerative medicine at Stanford and will be applying to medical school this summer. Her artwork "Beyond Blue" appears in the Spring 2018 Intima.

Thoughts on Poetry, On Dying by Mikki Aronoff

In my pre-poet life using creative arts therapies with adult and pediatric cancer patients, and later, with family and friends, I was honored to attend many “good” deaths. My personal debt to hospice caregivers became immeasurable – the support they give to the dying and to survivors, how they taught me to carve my own grief.

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Unconscious Memoir: Seeing My Medical Emergency from Others' Perspectives by Elisabeth Hedrick-Moser

In “A Life Less Terrifying: The Revisionary Lens of Illness,” a non-fiction piece published in the Spring 2016 Intima, writer Ann Wallace notes that “The act of living and of moving forward requires a constant recursive motion of looking back and re-visioning.” I’m newly aware of that recursive motion, as my essay “Fluid” opened an unexpected conversation with my family around my bout with sepsis pneumonia.

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How a poem entitled “All the Girls Were There, and Gorgeous” helps us reflect on illness, morality and memories by Andrew Taylor-Troutman

   Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story  “Cups and Such”  appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A year ago, a half-dozen older women gathered in a church fellowship hall. The coffee percolated as copies of “All the Girls Were There, and Gorgeous,” a poem by Carlene Kucharczyk in the Spring 2017 issue of Intima, were passed around our circle of chairs. As facilitator of this narrative healthcare workshop, I read the poem out loud. The gas logs hummed for a moment in the silent room. I was about to launch into questions specific to Kucharczyk’s remarkable poem when this participant spoke, quietly yet clearly: “Do you think it would be easier to have Alzheimer’s or ALS?”

A year later, her question came back to me and I wrote my little story, “Cups and Such,” not as an answer, but to continue the conversation.

Her question proposes a binary. In some ways, “Cups and Such” is the mirror opposite of Kucharczyk’s poem – a woman awake in her life, though / she doesn’t know it compared to a man fully aware of the betrayal by his body. But both poem and story deal with the same haunting theme: What is our relationship to our past? Memories flit and flash in and out of our consciousness like fireflies. Is hindsight really 20-20? Or, is it that we are continually revising our story to make meaning? “Revision” means to look again; etymologically, so does “respect.”

Skilled poets, like Kucharczyk, write with clarity yet focused ambiguity, thereby asking readers to look again and again for interpretations. We read and continue the conversation. A year later, I remember how the workshop participants were divided as to the moral character of the narrator: We do not like to visit her, / I hope she does not know. Was the narrator a “good granddaughter” or not? What is expected of us when a family member has a terminal disease? Could it be that the way the sick perceive us changes, say, from a bright shining face to the appearance of a moon? Is that cold and distant? Or, could the transformation be a natural reflection of a previous light?

And I still wonder, in Kucharczyk’s words, about the part that is elsewhere. Time is not linear. Perhaps there are moments, even in pain (whether physical or emotional or spiritual), when all the girls are gorgeous, when all is whole again and saved.


Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. His recent essays have been published online at Mockingbird (http://www.mbird.com) and his poetry at Bearings (https://collegevilleinstitute.org/bearings). He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. He and his wife have three children. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A Matrix for Healing: Understanding the Psychic and Moral Wounds on Clinicians During Wartime by Michael Brown, OD

Dr. Brown, in his evocative and poignant essay “The Moral Matrix of Wartime Medicine,” (Intima, Fall 2015), describes his experiences as a young physician during the Vietnam War and both the immediate and long-term effects of the psychic and moral wounds he and other military medical personnel accrued while serving in combat zones.

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Time of Death: How Clinicians Cope with A Patient's Final Moments by Anna Belc

I found so much comfort in Thomas J Doyle’s non-fiction piece "To Pronounce." He writes so vividly of entering a patient’s room to quietly declare time of death that I find myself standing right next to him, feeling the sadness he is describing. He has learned over time to honor the moment.  I hope that one day I will feel less lost when faced with the end of someone’s life.

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Enter: The Child Life Specialist by Janet Cincotta

Both “The Room” by Jodi Palik (Fiction/Fall 2016) and “The Last Stand” by Kelley Yuan (Studio Art) address the way children experience illness—from their unspoken fears, to their keen powers of observation, to their profound intuition about matters they may not understand. In my piece, “The Pull of Gravity” (Nonfiction/Fall 2017), I consider the long-term emotional and psychological aftermath of serious childhood illness as it played out in my family.

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How Doctors Respond to 'Difficult' Patients: A Reflection by Kendra Peterson, MD

In Sarah Shirley’s poem ‘Wernicke-Korsakoff’ (Intima, Spring, 2017), she elucidates the dilemma of caring for a patient who is angry, non-compliant, inarticulate, hostile, confused, or otherwise “difficult”. How do we reach across the barriers that such patients present, to find an opening through which we can glean from them the information we need to take care of them, and to establish mutual trust? 

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