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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
22 10

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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

22 comments

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Photo of Suzana Makowski
Team

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?

Photo of Ros Taylor
Team

Hi MK - we met at the Graphic Medicine Conference in Dundee. This is such a great project with excellent collaborators at Columbia.
As with Julie below - if you would like to test in the UK, we would be interested to talk more about possibilities at Hospice UK. The need to provoke conversations about the future is so needed now - and your graphic narrative approach will unlock this fear for many people. I too was inspired by Ros Chasts work - so good luck and do get in touch if you would like to talk further
Best wishes
Dr Ros Taylor   @hospicedoctor     Clinical Director Hospice UK            r.taylor@hospiceuk.org

Photo of MK Czerwiec
Team

Roz - thanks for commenting, and for your offer. I will speak with my colleagues ASAP and we will be in touch! 

MK

Photo of Julie Barker
Team

I think this is a great idea and look forward to hearing about the pilot evaluation. If you wish a UK testing site I'm sure this could be arranged. We partner with a university Palliative and EOL research department (Sue Ryder Centre, Queens Medical Centre, Nottingham University) who could evaluate here.

Warm regards,
Dr Julie Barker
Family Doctor
EOL lead local health commissioners

Photo of Amy Holliday
Team

I love your idea and would love to team up to explore utilizing your creations on the website and in the newsletter I am in the process of building to help re-imagine end-of-life experiences! I'll go into more detail tonight; just wanted to give you feedback now!

Photo of MK Czerwiec
Team

Thanks, Amy! 

Photo of MK Czerwiec
Team

Some early feedback from readers:

"I love this. And it made me realize that I don't know my dad's wishes. I'm pretty sure he has a DNR, but "pretty sure" is not good enough. That is all to say that I'm really glad you're doing this work because it's REALLY needed and important. And I love the way that it's so personal—not preachy. Just sharing a conversation and the accompanying thoughts that MANY people with older parents have—and then giving a resource that people might find helpful if they don't know where to begin."

"My dad's wishes? What are they? Uh, er. Prob DNR but not sure. Yikes. I'm going to show the link to him! I love the user experience map.”

"The idea is fantastic, the comic is quite realistic, suddenly feeling you don't really know what they'd want. Brilliant project."

MORE FEEDBACK WELCOME!

Photo of Matthew Noe
Team

MK Czerwiec  and team, 

This is a great idea, and while I think there is a way to make these kinds of comics work in any sort of medical care, there is something special about using them for EOL care. I am particularly hopeful to see some of the stories target a specific culture in a way that will better resonate - EOL is treated so differently based on culture that I think it is vital to address it in as specific a way as possible. 

The one question that immediately strikes me is to ask: how the team will make the comics work across both print and digital effectively? I've found that even the "big two" comic companies still have difficulty making the eBook versions of some titles work properly and there are different approaches out there as well  - from standard eBook pages to the more interactive versions that incorporate animation or gamification. There are great opportunities to incorporate further information beyond the story inside these more active digital systems (such as linking information to MedlinePlus or other consumer resources) and the possibilities are quite exciting!

Photo of MK Czerwiec
Team

Thanks, Matthew! I agree - the possibilities for this kind of project are vast!

As far as tailoring the comics and the conversation within communities, I think that is essential. Some important barriers to discussing EOL wishes are cultural - and interestingly, comics play different roles in different cultures. It would be great to have, for example, the cartoonist working on a resource for a community arise from that community. Fortunately Graphic Medicine and Narrative Medicine have found resonance in so many cultural communities, and that brings many cultural resources together for this project. 

As for digital presentation, I have much to learn, but right now I'm really enjoying the fairly simple comic presentation of The Nib (the website, their newsletter,  social media presence, and their print book) but open to ways collaborators may want, digitally and in print, to make the comics work for their communities. Thanks again for your comment! 

Photo of Jamie Whittaker
Team

MK and team,
This is fantastic! Is there any way the comic could be downloaded and have a fillable field so we could customize the resource being discussed based on location? Since we're in Canada and each province has specific planning tools, resources,etc.  it would be really cool if we could fill that info in on your existing comic. If that's not possible, I still see immense value in this. My colleague and I do end-of-life planning and although the people we work with want to talk about it, they often have a difficult time having the necessary conversations with others. You have created such a great solution to this problem and we could definitely see value in referring our clients to your comics. All the best on your project! 

Photo of MK Czerwiec
Team

Jamie - thanks for your comment and your encouragement! So glad you think the comic could be useful. Our idea is that rather than generalize the comic to work with any resource, instead a comic could be created that fits a narrative appropriate to the population and resource being targeted. Is there an example of a resource in Canada? I have quite a few Canadian cartoonist friends! Perhaps we could make that our next prototype. 

Photo of Jamie Whittaker
Team

Hi MK, we love the work you're doing and it is so applicable in many valuable ways! It completely makes sense to create the comics for a specific resource. What I had in mind was planning forms that are province specific in Canada (like the Supported Decision-Making Authorization). Glad to hear that you have Canadian cartoonist friends! I hope your idea gets a lot of traction and that we see it in doctors offices all over the place! All the best, Jamie

Photo of Doug Wilson
Team

I like the idea behind this. There's a group in Santa Rosa who's working on a similar project.
http://www.supportingchampions.org/everybody-needs-a-hippo.html

Photo of MK Czerwiec
Team

This is great, Doug! Thanks for sharing this project!

Photo of Chris Lee
Team

Hi Mk,

I like the idea of making difficult questions easier to approach by making them, literally, colorful and light.
Do you have additional examples of the comics you are working on for this project? It would be interesting to see the specific kinds of questions you are trying to help the clients work through.
Those examples might help tune the tone and approach.

Photo of MK Czerwiec
Team

Thanks for your comment, Chris! I have just completed the first part of a prototype comic and will post a second part later today. Your comment sparked us to realize how important having a prototype at this point in the challenge is. Thanks!! 

MK

Photo of OpenIDEO
Team

Welcome to the Refinement phase MK! Here are some key questions and milestones we encourage all idea teams to consider in the Refinement phase:

1. How might this idea address the unique needs of the target audience you're designing for?
2. Clearly summarize the value offering of your idea in 1-2 sentences
3. Communicate your idea in a visual way with user experience maps http://ideo.pn/UX_Map
4. Identify assumptions that need to be answered in order to validate your value offering: http://bit.ly/1Oi8ZHu
5. Collect feedback from potential partners and users to answer the assumptions you’ve identified.

Lastly, here's a useful tip: When you update the content of your post, it'd be helpful to indicate this in your idea title by adding an extension. For example, you can add the extension " - Update: Experience Maps 07/12" to you idea title. This will be a good way to keep people informed about how your idea is progressing!

Photo of Bettina Fliegel
Team

Hi MK. Thanks for sharing your project here!  Exciting!  The scenario you posted is great!

Are the comics conversation starters, left for review in a waiting room before meeting with a physician for example, or are they given to users after already being introduced to the topic within a workshop?  Are the comics presented on a website, or are they meant to be in print format?

Excited to see how your idea develops!

Photo of MK Czerwiec
Team

Thanks for your comment, Bettina. We would like to use the comics across need areas and platforms. So we envision print and online, for use in waiting rooms (great!), targeted workshops, and other scenarios. 

Photo of Bettina Fliegel
Team

Thanks MK.   When you create the graphic comics for health education purposes do you write at a particular literacy level?  Will the pilot group be a group of stories with one demographic in mind, or a group for a variety of users?  
I really like the idea of using comics for health education.  How soon in the process do you share ideas with users to get feedback?

Photo of MK Czerwiec
Team

One great thing about comics is, due to the synergistic relationship between image and text, their ability to access multiple literacy levels. (See work from Reading with Pictures: http://www.readingwithpictures.org/2012/04/why-teach-with-comics/) 

We hope to reach a wide range of users, and representation of many populations in these comics is something we think about extensively and will work to achieve. 

We would like to share our "prototype" comic very quickly after it is created to get feedback and make edits, and then use that feedback to inform the comics that will follow. 

Photo of Bettina Fliegel
Team

Congrats on moving the Idea into Refinement MK!