- Your Conversation Starter Guide
- Your Guide to Choosing a Health Care Proxy
- Your Guide to Being a Health Care Proxy
- Your Guide for Talking with a Health Care Team
- Your Conversation Starter Guide for Caregivers of a Child with Serious Illness
- Your Conversation Starter Guide for Caregivers of People with Alzheimer’s or Other Forms of Dementia
Over the past year, The Conversation Project has pivoted in the face of many difficult events, changes, and collective traumas – from the tragic physical and mental impacts of COVID-19, to fights for racial justice, to unprecedented political circumstances. But amidst these changes, our goal has remained the same: to ensure everyone’s wishes for care through the end of life are understood and respected. To stay true to our goal, we need to ensure the tools we produce are inclusive and accessible to everyone.
Over the last ten months, we set out to update our Conversation Starter tools to be sure they are appropriate and approachable for larger and more diverse audiences than we’d been originally reaching. We know there is no one tool that is everything for everybody, but we hope our new Guides will help you and those that matter – in your family, social circles, and your community – start talking and keep talking.
This isn’t the first time we’ve made changes. Whenever we hear feedback from individuals or community groups that warrants immediate change, we tweak our guides. Those that know us may be familiar with slight changes made over time. But, we knew it was the time for a full-blown review and a bigger refresh.
What we’ve learned, changes made to guides
Across the last several months, thanks to the generous support of the Cambia Health Foundation, we asked for feedback from dozens of leaders in the field from diverse backgrounds (race, ethnicity, gender, age, sexual orientation, religions, etc.) and serving various groups (in the community, health care, faith, educational institutions, etc.). We were sure to include those who have gone through or are going through the end of life with a friend or family member (adult or child/teen) or have personal experience with serious illness as a patient or caregiver. These leaders helped us recognize areas of improvement in the resonance, flow, and format of each of our Conversation Starter tools.
So, what did we learn? Through thoughtful feedback, both complex and simple, we made changes that address the above areas. And, we thought what we learned from these leaders was worth sharing as many are helping to bring The Conversation Project and other wonderful tools into your own communities. Here are the key things to know about changes we made to our guides:
- Reframed TCP: shift to use the frame of through end of life (EOL) and not being as death/EOL -centric on the cover or in opening language. We realized some folks were putting the tool down before working through the questions. Our goal is to focus on how you want to LIVE through the end of life. While we don’t shy away from EOL examples, we recognized we didn’t need to open with it quite so forcefully.
- Shifted to more targeted audience in some of the guides: our guide on Alzheimer’s and other dementias is now a resource specifically for caregivers. And, we split our proxy guide into two, one for choosing a proxy and the other on being a proxy.
- Simplified language and terminology to bring our guides to a lower reading level: fewer euphemisms and consistency in terminology used that will create ease for future language translations.
- Used more inclusive language, stories, and imagery:
- Edited for gender-neutral language (e.g. siblings rather than brother/sister) and options reflective of more LGBTQ+ experiences.
- Provided wider examples of who matters most/who to engage: such as an aunt, uncle, family friend, faith or spiritual advisors, etc.
- Added more inclusive stories: expand our examples used to wider audiences.
- Enhanced general diversity of photos and added illustrations throughout
- Incorporated lessons from current research (and from reviewers): to help message resonate with wider audiences.
- Emphasized conversations: why talking/conversation(s) matter – shift from “the” conversation to “a” conversation/conversations. We know this often takes place over many conversations and didn’t want to imply it all has to be done at once.
- Emphasized concept of preparedness: and “what I want” and how to talk about it.
- Emphasize empathy and no judgment
- Reframed the intros to make emotional connection: for example, take out the data (this is not a motivational factor) – and instead appeal to heart (not just the mind).
- Contextualized for the moment: recognize change in context due to COVID – uncertainty, social distancing, telehealth, etc. and weave this in.
While the above list may seem long, the changes made kept the integrity of our past Conversation Starter Kits (now called Conversation Starter Guides) that you and so many loved. You might not notice many changes as well! For example, we kept the simple, yet actionable step process, the scale questions, and our values-based framing and language around “what matters most”.
We currently have English, Spanish, and Chinese translations of each new guide available. For now, our older kit will be available in other languages until new translations are available. Remember, our guides are now editable through our creative commons license. That means you can translate them into languages best for your community. Please let us know if you do as we’d love to share these widely!
And, we will continue to tweak our guides, as we always do, when we hear feedback from you that warrants immediate updates. So, please keep the feedback coming and let us know if we are hitting (or missing) the mark. Let us know what you think of our new guides, below!
If you are interested in some one-on-one time to check-in and chat about our new guides and/or any other burning issues, sign up for our January 25th-February 3rd office hours. And, if these times don’t work, just ask us to set something up as we are always available for a conversation.