Tag Archives: Illness Narrative

Week 14: Narrative as an Agent for Change

*Erica Kaye, Misogyny in Medicine

*Adam Hill, Breaking the Stigma- A Physician’s Perspective on Self-Care and Recovery

*Rachel Hardeman et al, Stolen Breaths

*Damon Tweedy, Chapter 10: Beyond Race from Black Man in a White Coat (pgs 236-245)

*Storytelling as a Public Health Strategy to Address Inequities in Maternal Health Outcomes (from 4 – 40:54)

For our last week of class, students were tasked with writing op-eds of their own. I gave students the heads up that we would spend our last class session together workshopping the pieces they write. We began by reflecting on this week’s readings and identifying what made them effective and what room there was for improvement. We took notes and used our discussion to create a rubric of our own for analyzing our op-eds. We talked about the spectrum of editorial/op-ed/perspective pieces and how these range from sharing stories to raise awareness to factual-based summaries, with the common thread of sharing one’s perspective to further a specific argument.

In small groups, students had about 8 minutes to read one essay at a time. They were provided hard copies and encouraged to annotate by hand the op-eds they were reviewing. They then spoke to the following 5 topics based on the rubric we created in class:

  1. Title: does the essay have a title? Is it effective? If not, what might you suggest?
  2. Hook: How does the piece start? Does it have a powerful hook, ie an intriguing opening sentence, an immersive vignette, etc.
  3. Argument: is the argument well-organized? Is it supported by compelling evidence, anecdote, and/or emotion?
  4. Counter-Argument: are opposing perspectives acknowledged or addressed?
  5. Audience: who is the piece intending to reach?

I asked students to reflect all together: Which op-eds should be published, and why? I challenged students to think about why certain pieces stuck out to them as worthy of publication. Some even recommended pieces be published that they didn’t necessarily agree with, and we talked about what prompts people to share stories, even if they might not personally agree with it.

We wrapped up with a last writing prompt, protecting space to write, reflect, and share with one another:

Write about a time when you felt heard. OR Write about a time when you felt seen.

Looking forward to our Narrative Showcase: Show and Tell with final projects next week!

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Week 13: The Invisible Kingdom of Chronic Illness and LGBTQIA+ in Healthcare

Gianna Paniagua, Human Experience

*Meghan O’Rourke, The Plight of the Invisibly Ill
*Harvard Gazette, The problems with LGBTQ health care
*Benjamin Blue, Ambulance Stories
*Damon Tweedy, Chapter 9: Doing the Right Thing from Black Man in a White Coat (pgs 203-
*Part II Chapter 8: The Parallel Chart from Charon, Narrative Medicine (pgs 155-170)

Reflect on what narrative illuminates about experiences of chronic or invisible illness, or about experiences with healthcare for individuals who identify as LGBTQIA+. How can we use narrative to improve healthcare experiences and reduce health equity for these patient populations?

We entered into the “invisible kingdom” to learn more about experiences with chronic illness and LGBTQIA+ experiences in healthcare. We explored how isolating it can be for patient who have undiagnosed medical conditions or who suffer from chronic/invisible illnesses that requires multiple subspecialty care. The readings also illuminated the experiences of LGBTQIA+ patients within a healthcare system that is not always LGBTQIA+-friendly, and how we have room for improvement on an individual and a systemic level.

We have talked extensively this semester about the value of active listening, creating space for narrative within clinical encounters, and being willing to learn from patient narratives as we recognize the limits to modern medicine and medical knowledge. This week, I wanted to explore how we use narrative from a public health and policy standpoint to try to humanize the systemic experiences of patients with chronic illness/invisible disability and LGBTQIA+ patients. We practiced writing in small groups to approach different cases, such as raising awareness about invisible illness amongst student accommodations to advocating for gender-affirming care for transgender patients which is necessary and life-saving healthcare. These exercises demonstrated some of the potential as well as the challenge in using narrative to advocate for systemic change to promote health inequity.

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Week 12: Extreme Measures at the End of Life

*Watch Extremis documentary on Netflix (24 min)
*Pearson, No Acute Distress (pgs 205-250)

For this week’s class, I created an End of Life Jeopardy designed to help guide our conversation about hospice and palliative medicine and end of life narratives. I decided that jeopardy would be a playful way for us to cover a lot of ground about difficult conversation topics. Categories included Goals, Quality of Life, Ethics, Faith, Health Equity, and we talked about narratives at the bedside and in society about death. We did not keep track of points or have any winning teams. Instead, we divided into groups of three and each small group discussed each question together before sharing their conversation with the whole group. Students found that the jeopardy format worked well and allowed us to unpack many of the topics introduced by the readings and by the Extremis documentary.

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Week 10: Meeting Cancer, The Emperor of All Maladies

*Audre Lorde, The Cancer Journals

*Rachel Pearson, No Acute Distress (pgs 164-204)

What strikes you about cancer narratives in comparison to other illness or disability narratives? Identify what can be problematic about societal narratives of cancer.

After reviewing the final project and the final project proposal due to next week, we began a discussion about cancer narratives. We built on the themes discussed in the weekly posts to reflect on what is unique and different about cancer narratives compared to some of the other narratives we have read this semester, such as disability narratives and other illness narratives. Our conversation touched upon themes of fear, mortality, disability/normalcy, life after cancer, uncertainty/unknown, prognosis. We ponded what stories we tell as a society about cancer and what stories and experiences go left untold. We imagined the implications of how society narrates cancer, and how these narratives might impact people with cancer.

We then explored the medium of graphic medicine, or comic art, to understand cancer narratives through a different lens. In groups of two, we looked at various excerpts from some of the most well-known cancer graphic memoirs such as Marisa Marchetto’s Cancer Vixen, Miriam Engelberg’s Cancer Made Me a Shallower Person, Brian Fies’ Mom’s Cancer. We observed how the addition of imagery in combination with text created a different dimension to these stories and shared different kinds of emotion through the multiple layers that go into comic art.

Last but not least, we experimented with creating our own graphic art to tell a story of cancer- either based on a reading or a personal experience. It was interesting to create through a different lens than writing since writing is a form of expression that our society is far more accustomed to using. Through the art incorporated into graphic medicine, we had the opportunity to experience something different from traditional written narratives.

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Week 9: Ethics of Narrative in Medicine

*Part II Chapter 7: Attention, Representation, and Affiliation from Rita Charon, Narrative Medicine (pgs 107-130)

*Part IV Chapter 9: Bearing Witness and 10 Bioethics from Rita Charon, Narrative Medicine: Honoring the Stories of Illness (pgs 177-218)

*Healing Narrative: Ethics and Writing about Patients, AMA Journal of Ethics

Reflecting on what you have learned about narrative medicine so far this semester, what ethical considerations must be made when we think of narrative medicine? Some examples of ideas to reflect on include: 

-ethics of practicing narrative medicine clinically with patients (i.e. how to do so equitably)

-ethics of sharing the stories of our patients and/or colleagues and/or loved ones (i.e. issues of attention, representation)

-ethics of how society tends to share certain narratives and silence others, and why this occurs

-ethics of how healthcare systems use patient narratives (i.e. for marketing, for donors)

Are there narratives that we have encountered this semester that feel less ethical than others? If so, why?

This week, we took a step back to reflect on the ethics of narrative medicine. We began with a writing prompt: Write a story about a healthcare experience that isn’t yours to tell. We talked about what makes a story yours to tell, and different writing techniques for writing a story that isn’t yours to tell.

After briefly discussing Beauchamp and Childress’ 4 Biomedical Principles of Ethics, we launched into 3 work groups to define our own policies about Consent, Patient Care, and Marketing/Fundraising. We unpacked what best practices of using stories in these different spaces might look like and created our own standard practices for ethically using stories. Topics included de-identification in narrative and the importance of obtaining patient permission, reframing stories propagated amongst healthcare professionals, and imagining patient-centered approaches to storytelling for marketing/fundraising purposes.

We returned to the same story we wrote about earlier and wrote again: Write about the same healthcare experience as a story that is yours to tell. We reflected on how different this experience felt, and how different the stories were that emerged.

After our break, we began an informal debate to illuminate different perspectives to consider with the ethics of storytelling in medicine. Students were each assigned as patients, families, clinicians, or hospitals. We discussed stories that emerged earlier in class or scenarios that people wrote about in response to the writing purpose.

I concluded class by sharing my own imperfect framework for considering the ethics of narrative medicine:

Who- who is telling the story? Who is receiving the story?

What- what is the story being told?

When- at what time is the story being told?

Where- location of storytelling, i.e. at the bedside, in elevators and stairwells, social media

How- rhetoric, tone, language used to tell story, making space for storytelling?

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Week 8: Embracing Illness- (Dis)Ability in Children’s Literature

*DSM-V entry for autism

*Chew and Raymaker, 10 Autism Controversies

*Autism blogs (Disability in an Ableist World, The Obsessive Joy of Autism, The Significance of Semantics: Person-First Language: Why it Matters)

How is disability different than illness? Reflect on how narratives or depictions of disability compare to illness narratives. OR Write about examples of Ableist language and the implications of using Ableist language. 

This week, we entered into the world of disability studies to learn more about neurodiversity and autism in particular. After the writing prompt “On Being Different,” inspired by the Pulse- Voices from the Heath of Medicine 2023 Writing Contest, we viewed the video “In My Language” by Amanda Baggs. After briefly defining neurodiversity, we did a Disability Rounds activity with 7 minutes per station.

We analyzed several videos about autism:

I stim, therefore I am [Loud Hands Blogaround], Rethinking Autism: Autism Support Group, and “Fixing” Autism

We reflected on several children’s books about autism:

Little Rainman: Autism — through the eyes of a child by Karen L. Simmons

I am Utterly Unique! Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism by Elaine Marie Larson

The Kaleidoscope Kid: Focusing on the Strengths of Children with Asperger Syndrome and High-Functioning Autism by Elaine Marie Larson.

And lastly, we unpacked the following figure from a recent study published in May 2022 by Weir et al. showing that “Autistic adults have poorer quality healthcare and worse health based on self-report data.”

We had interesting conversations demonstrating a range of reactions and thoughts about these different autism narratives. Many people were in particular surprised to hear about the idea of using identity first language for Autism, since this is very different from the person-first language we most often try to use for illness. We talked about what differentiates disability from illness, what it means to be on medication for a disability, and how we decide when to use medications for disabilities. It was a great introduction to the idea of disability studies with so much more to talk about!

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Week 7: No Apparent Distress: Narratives of Socioeconomic Inequity

February 27- No Apparent Distress: Narratives of Socioeconomic Inequity

+Cultural Intelligence Workshop with Dr. Duane T. Loynes Sr. Part 2

*Rachel Pearson, No Apparent Distress (pgs 94-163)

*Nakisa Sadeghi, Through the Eyes of the Interpreter

Optional reading about ‘poor historian’: *Steven Server and Samuel Schotland, It’s time to retire ‘poor historian’ from clinicians’ vocabularies.

Write about something that struck you in this week’s excerpt of No Apparent Distress.

This week, we were joined by Dr. Loynes to complete our workshop on cultural intelligence. We explored our assessments and reflected on how our results compared to other racial groups within the US and even other cultures around the world.

We brainstormed what childhood experiences might affect health outcomes, then learned about Adverse Childhood Experience (ACEs). We made a list of what we would imagine might be factor into Adverse Community Environments. We then talked briefly about Trauma-Informed Care and how we might standardize trauma-informed approaches in healthcare. Afterwards, we discussed in two groups the pros, cons, and ways we could change medical education anatomy practices and student-run free clinics to ensure that these are more equitable to donors and patients from lower socioeconomic statuses.

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Week 6: No Apparent Distress: Narratives of Health Inequity in Medical Education

*Rachel Pearson, No Apparent Distress: A Doctor’s Coming-of-Age on the Front Lines of American Medicine (pgs 1-93)

*Health Inequity in Medical Education: Hidden Curricula, Ethics, and Professionalism: Optimizing Clinical Learning Environments in Becoming and Being a Physician: A Position Paper of the American College of Physicians

**Mid-term Narrative Analysis Paper Due.

Since your mid-term paper is due this week, feel free to keep your reflection on this week’s reading brief. Comment on a quote or idea or story that intrigued you, OR  you may choose to unpack one of the following quotes: 

“What does a good doctor do, when the institution she works for compels her to abandon patients who obviously need her help?” (pg 52)

“This is the precise strangeness of learning to see like a doctor. If you believe hard enough in the truths of biochemistry and anatomy, what surrounds them– people with their suffering, the politics of a society that lay this particular body into your hands– seems not to matter at all.” (pg 69)

“By discouraging us from seeking psychiatric care, it makes both us and our patients more vulnerable. It drives a suicide-prone population away from the help we may need.” (pg 92)

OR Reflect on why the ‘hidden curriculum’ might perpetuate health inequities in medicine. How might narrative medicine approaches reveal and challenge the ‘hidden curriculum’? How do we get rid of the disconnect?

For the first half of class, we unpacked some of the challenges of the hero narrative in medicine. We talked about how our society endorses the hero narrative for physicians, and the implications that this has on providers. We explored how barriers that limit our ability to provide the best patient care can be frustrating, and how sometimes providers speak about patients and misplace this frustration on them instead of on the barriers. While it is important for providers to advocate for their patients, we unpacked how desires to provide the best patient care can lead to tension between providers when there are different perspectives about what is best for a patient.

Following this conversation, we split into groups and worked through cases that represented the following three questions. These cases revealed some of the challenges in

  1. How do we respond to these narratives in real-time?
  2. How do amplify the voices of those experiencing health inequity due to race?
  3. How do we change the dominant narratives about racial inequity?

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Week 5: Black Man in a White Coat: Narratives of Racial Inequity

*Damon Tweedy, Chapter 2: Baby Mamas and Chapter 4: Inner-City Blues from Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine (pgs 30-53; 78-102)

*Jennifer Okwerekwu, What Racism in Medicine Takes From Us

*https://www.npr.org/2010/02/01/123234261/excerpt-the-immortal-life-of-henrietta-lacksLinks to an external site.

How do these three writers share stories of racial inequity? Who is telling each story, and how does their perspective influence the narrative they share about inequity? What did you learn about health inequity through these narratives?

For the first half of class, we had the honor of guest speaker Dr. Duane Loynes, Associate Director of Equity and Culture at Rhodes College, joining us and teaching us about cultural humility. We each completed a cultural intelligence survey which involved evaluations by three people who know us in addition to our own self-reflection to assess our cultural humility.

Following this session, we engaged in the following writing prompt: Write about a situation where race impacted how a person was treated (in healthcare). Students had several powerful examples about race impacting patients within healthcare. We then introduced three questions to explore more deeply which we would continue to discuss in subsequent classes:

  1. How do we respond to these narratives in real-time?
  2. How do amplify the voices of those experiencing health inequity due to race?
  3. How do we change the dominant narratives about racial inequity?

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Week 4: Living Beneath The Bell Jar of Depression and Mental Illness

*Excerpt from Sylvia Plath, The Bell Jar (pgs 112-244)

*Colleen Farrell, Systole and Diastole, Strength and Openness

*Rebecca Grossman-Kahn, Beyond the Rubble of Lake Street—Minds in Crisis in a City in Crisis

**CQ Assessment Due.

We jumped into two poems by Sylvia Plath: Lady Lazarus and Tulips. Pairs of students explicated each poem and then shared their conversations. We talked about what was different about poetry as a genre as compared with the quasi-autobiographical work of Plath in The Bell Jar and the narrative essay style of Dr. Farrell. We talked about some concepts that help guide psychiatry, such as the DSM-V (and some of its limitations), stigma, how we define normal vs. abnormal, functional impairment/subjective distress.

We watched the following video as we transitioned to thinking about mental health inequities:

We then discussed widespread mental health inequities and cultural considerations for trying to decrease these inequities amongst different patient populations: Black/AA, Native and Indigenous, Latinx/Hispanic, Asian American/Pacific Islander, Arab/Middle Eastern, Multiracial communities. In groups of 2-3 each, students each studied one of these patient populations and shared their findings with the larger group.

For the second half of class, we had the honor of guest speaker Dr. Rebecca Grossman-Kahn joining us virtually to speak about her NEJM piece “Beyond the Rubble of Lake St– Minds in Crisis in a City in Crisis” and narrative medicine in psychiatry. We had a great conversation and covered a lot of ground. Topics discussed included the following:

-how we communicate mental illness to patients

-how we collaborate with families to better understand when patient narratives might not provide the whole picture

-the art of practicing psychiatry with an attention to narrative

-how we make decisions about when to limit or take away a patient’s autonomy (i.e. through involuntary commitment for mental health)

-how we address health inequity and social justice at the bedside and through the medical system.

My Week 4 lesson plan and slides are included below:

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