Learning About Patients Outside the Clinic: Using Stories for Improved Healthcare Outcomes

Alan S. Weber, PhD, Weill Cornell Medicine - Qatar

Abstract

When patients are informed by their doctor of their diagnosis, they immediately begin to wonder what their lives will be like and what the suggested treatment plans will mean for them psychologically, emotionally, and financially as well as how their illness will affect their family. Doctors may not have adequate time in the patient encounter to fully explore the consequences and challenges of facing chronic illness, or to explain support services. Published patient stories can be an effective way of educating patients about the social and psychological dimensions of their disease and are regularly used by patient education groups such as the American Cancer Society (survivor stories). The fields of Narrative Medicine and the Medical Humanities attempt to incorporate humanistic knowledge into medical practice in other ways as well. For example, reading novels, plays, poetry and short stories about patient illness helps doctors and medical students understand the patient point of view and leads to better doctor-patient relations, more culturally sensitive healthcare, and greater understanding on how social factors such as poverty, social status, religion, and culture impact health and healing. Greater attention to these sometimes neglected areas of healthcare has been shown to improve patient outcomes. Also, ethics cases are essentially narrative in nature (case-based), and the field of narrative ethics draws attention to the structure of ethics dilemmas as stories.

Learning Objectives

After the workshop, participants will be able to:

1. Describe the scope and goals of the fields of Medical Humanities and Narrative Medicine
2. Evaluate the evidence base for improved patient outcomes using narrative medicine and medical humanities approaches and interventions for:
   • better patient education
   • improved doctor-patient relations
   • culturally sensitive healthcare
   • improved diagnostic accuracy
   • improved follow up / home care
3. Assess the value of using narrative medicine in your practice and patient education programs
4. Evaluate a resource pack of materials for implementing the medical humanities in your clinic and for private study

Workshop Outline

Number of participants: 25

Time	Topic
Part I	Stories In Medicine: Understanding Patients
1:15pm – 1:30pm	Introductory Lecture: What are the Medical Humanities and Narrative Medicine? Video: Narrative medicine (https://www.youtube.com/watch?v=6GyivvzFxWk)
1:30pm – 2:00pm	Silent Reading: One poem and one very short story.
2:00pm – 2:15pm	Small group discussion of the reading.
2:15pm – 2:35pm	Group reports on discussion and general discussion.
2:35pm – 2:55pm	Coffee Break
Part II	Survivor Stories: Helping Patients Understand Themselves
2:55pm – 3:15pm	Introductory Lecture: Stories in patient support and education. Online video stories. Narrative Ethics. (https://www.youtube.com/watch?v=hO07qwMgP54)
3:15pm – 3:20pm	Pass out illness graphic novels and Qatar Cancer Society cancer survivor stories for review.
3:20pm – 3:45pm	Small group analysis and discussion of a brief graphic medicine story.
3:45pm – 3:55pm	Reflective writing exercise: Would survivor stories be useful in your practice? Why or why not?
3:55pm – 4:15pm	Wrap up, group reflection and discussion of resource packet.

References

Narrative Ethics

Arendt, Hannah. The Human Condition. 1958.

Charon, Rita and Martha Montello, Eds. Stories Matter: The Role of Narrative in Medical Ethics. 2002.

Charon, R. “The ecstatic witness.” In Clinical Ethics and the Necessity of Stories: Essays in Hornor of Richard Zaner. Edited by Osborne P. Wiggins and Annette C. Allen. 2011.

Charon, R. Commentary on “Creative Expressive Encounters in Health Ethics Education: Teaching Ethics as Relational Engagement.” Teaching and Learning in Medicine. 2009.

Charon, Rita. "Narrative Medicine: Form, Function and Ethics". Annals of Internal Medicine, 2001.

Coles, Robert. The Call of Stories: Teaching and the Moral Imagination. 1989.

Coles, Robert. Handing One Another Along: Literature and Social Reflection. 2001.

Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. 1995.

Frank, Arthur. The Renewal of Generosity: Illness, Medicine and How to Live. 2004.

Frank, Arthur. Letting Stories Breathe. 2010.

Goodrich, T.J., Irvine , C. , Boccher-Lattimore, D. “Narrative Ethics as Collaboration: A Four-Session Curriculum.” Families, Systems, & Health. 2005.

Himmelfarb, Gertrude. The Moral Imagination: From Burke to Trilling. 2006.

Lara, Maria P. Moral Textures: Feminist Narratives in the Public Sphere. 1998.

MacIntyre, Alastair. After Virtue: A Study in Moral Reasoning. 1984.

Nelson, Hilde L. Stories and the Limits: Narrative Approaches to Bioethics. 1997.

Nelson, Hilde L. Damaged Identities, Narrative Repair. 2001.

Nussbaum, Martha. Cultivating Humanity. 1997.

Plummer, Ken. Intimate Citizenship, “Stories and the Grounded Moralities of Everyday Life”. 2003.

Witherell, C. & N. Noddings eds. Stories Lives Tell: Narrative and Dialogue in Education. 1991.

Narrative Medicine and Graphical Narrative Medicine

Coulehan, Jack, ed. Chekhov's Doctors. 2003.

Carol Donley & Martin Kohn, eds. Recognitions. 2002.

Carol Donley & Sheryl Buckley, eds. What's Normal?: Narratives of Mental and Emotional Disorders. 2000.

Carol Donley & Sheryl Buckley, eds. The Tyranny of the Normal. 1996.

Martin Kohn, Carol Donley, & Delese Wear. Literature and Aging. 1992.

Arthur Kleinmann. The Illness Narratives: Suffering, Healing And the Human Condition. 1988.

Howard S. Brody. Stories of Sickness. 2003.

G. Thomas Couser. Recovering Bodies: Illness, Disability and Life writing. 1997.

Rita Charon. Narrative Medicine: Honoring the stories of illness. 2006.

Green, MJ. “Teaching with comics: a course for fourth-year medical students.” 2013.

Kohler Riessman, Catherine. Narrative Methods for the Human Sciences. 2007.

Elaine Powley and Roger Higson. The Arts in Medical Education: A Practical Guide. 2005.

Greenhalgh, Tina. What Seems to Be the Trouble? Stories in Illness and Healthcare. 2006.

Barritt, Peter. Humanity in Healthcare: The Heart and Soul of Medicine. 2001.

McNicol S.  “Humanising illness: presenting health information in educational comics.” 2014.

Posen, Solomon. The Doctor in Literature: Satisfaction or Resentment? 2005.

Weber, A.S. “Use of cloud-based graphic narrative software in medical ethics teaching.” 2015.

Cancer Survivor Stories for Clinical or Support Group Use

American Cancer Society

Stories of Hope (by type of cancer)
http://www.cancer.org/treatment/survivorshipduringandaftertreatment/storiesofhope/index

National Cancer Institute
Cancer Survivor Stories
http://www.cancer.gov/cancertopics/coping/survivorship/survivor-stories/page1

Susan G. Komen
Stories of Inspiration (breast cancer)
http://ww5.komen.org/BreastCancer/StoriesofInspiration.html

Cancer Treatment Centers of America
Meet our cancer survivors (by type of cancer)
http://www.cancercenter.com/community/survivors/

Mayo Clinic
Cancer Patient Stories
http://www.mayoclinic.org/patient-stories/cancer

Dana Farber Cancer Institute
Cancer Survivor Stories
http://www.dana-farber.org/For-Adult-Cancer-Survivors/Cancer-Survivor-Stories.aspx

Children’s Cause Cancer Advocacy
Stories from Survivors
http://www.childrenscause.org/survivor-stories

St. Jude Children’s Research Hospital
Survivor Videos and Voices
http://www.stjude.org/stjude/v/index.jsp?vgnextoid=7272f2bc91880410VgnVCM100000290115acRCRD&vgnextchannel=2a71f2bc91880410VgnVCM100000290115acRCRD

Oncolink Survivor Stories
https://www.oncolink.org/coping/coping1.cfm?c=400