Narrative Medicine: Encouraging Patient Resilience and Hope Rob Slocum, D. Min., Ph.D. Narrative Medicine Program Coordinator UKHealthCare

Agenda Narrative Medicine Video Introduction to Narrative Medicine Narrative Scenarios – Videos with Stories Journal Workshop

Learning Objectives Describe basic principles and methods of Narrative Medicine  Apply basic principles and methods of Narrative Medicine in interactions with patients Identify appropriate cases for referral to a Narrative Medicine facilitator

Financial Disclosure The presenter has no relevant financial relationships to disclose

Narrative Medicine Video http://uknow.uky.edu/content/markeys- narrative-medicine-programs-helps- heal-mind-and-body#.

Narrative Medicine Introduction

Narrative Medicine as an Expression of Medical Humanities Medical Humanities as applying disciplines, perspectives, ways of knowing, insights from the humanities to medical practice and education. Epistemology in terms of ways of knowing—not just one way, no single way of knowing is most effective in all contexts. Different ways of knowing, like different instruments or tools, serve best in different situations (don’t fish with tennis racket, identify music with a microscope). Don’t try to identify one way of knowing as most appropriate in all contexts.

Narrative Medicine as an Expression of Medical Humanities Identify narratives already active in patients’ lives and stories. Identify characters, plot, motivations and obstacles, conflicts and resolutions in patient’s narrative. Draw out role of patient as central character in own story. Affirm significance of patient’s thoughts and feelings.  

Narrative Medicine as an Expression of Medical Humanities Identify unfolding plot of patient’s own story, in narrative world of patient’s experience of illness and treatment, taking into account symbols and meanings expressed in the patient’s narrative. Listen (pay attention) to verbal and nonverbal expressions. Discern and encourage role of unfolding narrative in expression and formation of patient’s identity during illness and treatment. Help patient claim and articulate personal meanings and sense of self as expressed through narrative.

Narrative Medicine is… Patient Centered Listen! Respect! See the whole person Interactive & Dynamic Expect the unexpected! Collaborative Share information and insights with treatment team members!

Use of Self: Hearing and Healing “The self is the physician’s most important therapeutic tool, for the healing that comes from sitting by a patient, leaning forward and listening fully—without interruption or ready judgment—often goes beyond any cure. While listening for the nuances of a patient’s story, to what the body—and the person—are saying, a relationship of authenticity and trust begins.” -Mary T. Shannon, “Giving Pain a Voice: Narrative Medicine and the Doctor-Patient Relationship”

Engaging Patients’ Stories Patients may… Perceive their illness, treatment, & entire lives in terms of stories Recover or rediscover meaning & identity in terms of stories Reframe their self-understanding with a new story Claim the role of central character in their own story (Rosenblatt) Types of patient stories: restitution, chaos, quest (Arthur Frank)

Core Questions What brings you here? What helps you the most? Do you see anything differently? What comes next?

Will to Live Patients bring with them (and may change) their own attitudes concerning… Illness Treatment Living

Pain and Suffering Physical pain without suffering Child birth Athletics Suffering without physical pain Loss of meaning Demeaning events

Humanize or Dehumanize Identity Dignity Autonomy Relationships Respect Meaning

What brings you here? Story Symptoms Diagnosis Getting to treatment “Underdiagnosis”/“Overdiagnosis” Getting to treatment Prognosis Treatment plan

What helps you the most? Observe Identify or discover values Frequent answers Faith Family Friends Personal strength Favorite activities Staff & outstanding facility

Do you see anything differently? Different perspectives? Different priorities? Has anything changed? Frequent answers Don’t take things for granted Thankful attitude Some things that seemed important are not important Give time to things that matter most Don’t put off or defer important things Acknowledge limitations

What comes next? What do you look forward to? (Frankl) What do you want to do with the rest of your life? What will you do first when you get home? Frequent answers Deferred dreams, goals, adventures Family milestones Complete projects, plans Favorite work or recreational activities

Levels of Visits Discussions may move between levels Basic visit– introduction and explanation, core questions, beginning discussion, inquire and listen, draw out story, support Follow up visit– developing story in detail, unfolding story shared by patient, sustaining through changes Patient engages a concern or issue to talk through in context of story, patient explores understanding and discovers insight through sharing story Discussions may move between levels

Additional Possibilities Follow-up visits Life review Journal writing Journal workshop

Journal Workshop

Overview and Summary of Studies Quantitative Studies Qualitative Studies Reflections

Narrative Ethics Factual scenarios as stories Characters, conflict, possible resolutions Does the story “make sense” of the facts presented?  Is something “missing”?  Does a different story make better sense of the facts presented?

Narrative & Patient Identity Patient’s essential identity – who the patient is – understood in terms of each patient’s story Patient’s illness as “biographical disruption” (Lossignol) Impact of symptoms understood relative to identity Patient may reclaim or rediscover identity during treatment – exploring story to renegotiate identity

Narrative Medicine Case Notes Haven’t lost everything. Patient reframes understanding of situation when reminded of family support. Accept vulnerability, let daughter visit. Let in help. Riding the tractor. Used to being active. Victory lap. Claustrophobic in house. Team questioned informed consent but story clarified. Traumatic post-op in restraints. Open the discussion. Able to sleep, eager to talk. Turtle time. Find new reference points, ways to recognize contexts. Find humor in situation.

Narrative Medicine Case Notes Attending talked over me, didn’t listen, made a decision about what was wrong and got impatient if I seemed to disagree. Patient can find self, concerns, choices when listened to. Nothing helps. Adult daughter right there. See sources of support and resources available. Combat veteran avoids crowds, loud noises, keeps war stories inside until he’s ready to talk with someone he trusts. Opening up just a little changes everything.

Narrative Medicine Case Notes PNES patient aggravated by stressors, experiences spells, explores ways to manage and deflect stress, experiences fewer spells. Reflection seems to externalize the problem, separate pt from problem, making it manageable Neuro-oncology patient initiates unnecessary lifestyle changes that make life less satisfying—running, mowing the grass—assumes this is needed by condition and treatment, isn’t, returned to favorite activities. PNES heart patient goes through multiple life crises with frequent spells, talks through situation, lives through situation so crises sort out one by one, decreased spells.

Narrative Medicine Case Notes VAD implant patient with long recovery, nurse unfamiliar with case questions why still seeking curative measures, long perspective on patient’s story shows slow but steady improvement, patient strongly committed to recover. Cancer patient receiving chemo with high anxiety. Conversation discloses pt isn’t especially anxious about cancer or chemo. Pt is still dealing with traumatic accident in which close relative died, he survived.

Narrative Medicine Case Notes Go to patient’s story. Infusion clinic patient not worried about cancer or first chemo but actively grieving sudden death of husband six months before, shares her grief Cancer patient failing to thrive after transplant. Medically ok. Story and observation and family report discloses eating disorder Patient was ambivalent about potentially life-saving surgery. After discussion patient had the surgery.

Narrative Medicine Scenarios Videos with a story https://www.youtube.com/watch?v=uqnq LrakxY8 https://www.youtube.com/watch?v=tYjK2 kANhok

Journal Exercise