Narrative Medicine: Encouraging Patient Resilience and Hope

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

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

3. 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

4. Financial Disclosure • The presenter has no relevant financial relationships to disclose

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

6. Narrative Medicine Introduction

7. 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.

8. 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.  

9. 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.

11. 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!

12. 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”

13. 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)

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

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

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

17. Humanize or Dehumanize • Identity • Dignity • Autonomy • Relationships • Respect • Meaning

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

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

20. 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

21. 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

22. Levels of Visits • 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

23. Additional Possibilities • Follow-up visits • Life review • Journal writing • Journal workshop

24. Journal Workshop

25. Overview and Summary of Studies • Quantitative Studies • Qualitative Studies • Reflections

26. 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?

27. 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

28. 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.

29. 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.

30. 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.

31. 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.

32. 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.

33. Narrative Medicine Scenarios • Videos with a story • https://www.youtube.com/watch?v=uqnqLrakxY8 • https://www.youtube.com/watch?v=tYjK2kANhok

34. Journal Exercise