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Using Comics to Empower End-of-Life Care Conversations

We will create and share comics about end-of-life planning conversations to explore barriers, model success, and share resources.

Photo of MK Czerwiec

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Who is your idea designed for and how does it reimagine the end-of-life experience?

Our idea is designed for people who have not discussed end-of-life care wishes with their loved ones. Each comic will pair a conversation barrier (based on narrative research input) with an existing resource that might address that barrier. Our comics reimagine the end-of-life experience by utilizing the unique approach of lighthearted comics to model successful conversations. Our comics aim to empower readers to succeed in communicating vital care wishes to their loved ones.

Our idea is a suite of comics that will address the barriers that prevent people from discussing end-of-life care wishes with loved ones. Our idea addresses the problem by using the inviting and approachable medium of comics to demonstrate these barriers in action and model concrete methods for overcoming them.  

The purpose of this project is to develop, create, and test a pilot group of four comic narratives that will get people talking about their values and wishes at the end of life. This pilot is designed to generate participation in conversations about what matters to people in life, how they want to live, under what circumstances, and how they might want to die. 

Our comics will create a non-threatening invitation to end-of-life reflections and conversations by leveraging the strengths of of the comics medium, which include modeling empathy, nuanced narratives, light-hearted visuals, and cross-generational, cross-cultural appeal. Our comic materials will work flexibly across print and electronic platforms for use in home, community, and medical settings.

Graphic Medicine (a term coined in the last ten years to refer to the intersection of comics and health) utilizes a potent blend of compelling personal narrative and visual humor. The comic/graphic format has a proven ability to convey complex information in simple, straightforward ways. Comics can also explore topics that are otherwise extraordinarily difficult, often even stigmatized, like death itself. We are convinced that graphic narratives can change the tenor of the end-of-life conversation, bringing an accessible, non-threatening approach to a weighty subject, empowering thousands of patients, families, and health-care professionals to feel comfortable initiating and conducting advanced-care planning conversations. Our work is underpinned and heavily informed by the work of Narrative Medicine, that is, health care practiced with recognition of the value of the participants' life stories in clinical practice, research, and education.

The project will produce an initial set of four completed short graphic narratives that represent the perspectives and insights of patients, families and health-care professionals. Twelve to twenty additional text narratives are ultimately planned, to allow for a variety of barriers to be addressed and stakeholder populations to be represented. We will work with a variety of comic artists, some widely recognized and some less known, to create this body of work. We believe that a variety of approaches will make for a vibrant collection that allows for a range of visual sensibilities and points of access.  Patient, family, and clinician stories will be drawn from interviews with, or done by, project collaborators. These graphic narratives, and the ones that follow after this pilot phase, will become a resource for families, health care providers, community organizations, and facilities who are looking for ways to begin talking about end-of-life values and wishes.

One of the inspirations for this project is a graphic memoir by Roz Chast, published in 2014 by Bloomsbury, Can't We Talk About Something More Pleasant. In this full-length, highly acclaimed comic memoir, Chast deftly uses the comic medium to show the difficulty, complexity, emotional contradictions, and potential consequences inherent in attempting to discus end-of-life care with aging parents. In addition to the image we've posted above, you can read a longer excerpt from her book here

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

We have the opportunity to pilot our graphic narratives through a year-old advanced care planning program in the Jewish community of New York City. The program, "Respecting Choices," is Gundersen Health System's world-renowned method of training facilitators to have conversations with peers to craft and execute their advance directives. The organizers of the program are extremely enthusiastic about the idea of using graphic narratives as part of their program.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

This community can share valuable feedback on our comics, and guide us on making new ones. We seek to explore opportunities for collaboration here, essential to achieving the most innovative and compelling results. Our approach can be invaluable in extremely wide range of environments and contexts. "Once Upon a Time", "Death Ed" and "Teaching A New Mindset about Death and Dying in our Schools" are just a few examples of possible collaborations.

Tell us about your work experience:

Marsha Hurst, PhD teaches in the Narrative Medicine program at Columbia University. Lois Perelson-Gross, MA, MBA was recently awarded a 2016-17 Narrative Medicine Fellowship from Columbia to develop this project. MK Czerwiec, RN, MA is a hospice nurse, cartoonist, and co-founder of Graphic Medicine.

This idea emerged from

  • A group brainstorm

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What a fabulous idea.
Matt Noe (a librarian researching use of graphic medicine) and I will be certain for follow your project.  Also, the group from Honoring Choices MA will certainly follow as well.
I love seeing how you are creating the outline and identifying the subcomponents of the story!  Fascinating.
One question: will you be getting input about any of the content?  
The visual of results of those decisions has influenced decision-making with videos, I wonder - is it possible to have a graphic novel with more than one outcome?  To see what happens when someone chooses full-code vs. when someone chooses DNR or hospice care for end of life care?

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