Some conversations are hard because the topic is challenging. Some conversations are hard because words mean different things to different people. Some conversations are hard because the message is impactful, and word choice is particularly crucial while clarity is also essential. Conversations around living with serious illness match all these situations. When discussing serious illness in the life of a child we are engaging in conversations that are not just life-changing but will potentially be remembered and thought back to often.
Are we ready for these conversations? Probably not. Has life trained us how to have these conversations? Rarely. When living with serious illness, is there one big conversation to be had and then we are done? Big no here. Conversations are not once and done. As illnesses progress, developmental stages are traversed, treatments are discussed, and days are conquered there are many conversations to be had. Perhaps we can look at conversations as a vehicle in which we travel through different stages and decisions of living with serious illness. Conversations help us travel these paths with understanding, awareness, clear goals, commonality, safety, and shared vision. These conversations are essential and helpful throughout the whole journey, including moments of triumph, desperation, peace, confusion, and resolution.
Conversation as a vehicle can be as intimate as a 2-seater coupe, it can let some sunshine and truth in as a convertible, it can even expand to a bus when the whole treatment team participates. Conversations are the versatile vehicle needed to help us manage all the pieces of living with complex, pediatric illnesses. Are there clear, specific resources to help us have these conversations? Yes, absolutely! Let’s meet the Conversation Project!
The Conversation Project was created for this exact purpose- to help provide the tools and framework needed to ensure that the conversations around living with a serious illness go well and accomplish what we were hoping for. They provide Conversation Starter Guides for the following:
- How to talk about what matters to you and have a say in your health care.
- For caregivers of a child with serious illness.
- Your guide for talking with a health care team.
- And a workbook “What Matters to Me, A Guide to Serious Illness Conversations”
We fully recommend doing these any time you feel that your situation has changed and you have some new things to figure out. You can print them and write on them, or you can save/rename them in a PDF annotator (like adobe acrobat, or kami) so that as you fill them out digitally, they work well that way too.
Enjoy this introductory video to The Conversation Project, then browse a few of their materials below.