The Conversation Project is an initiative of the Institute for Healthcare Improvement to initiate discussion and improve the quality of communication about end-of-life wishes. “While 92% of Americans say it’s important to discuss their wishes for end-of-life care, only 32% have had such a conversation.” (The Conversation Project National Survey, 2018). The Conversation Project wants to change this statistic because, though it can be a difficult conversation, it’s crucial for ensuring that end-of-life care wishes are understood and ultimately respected. As a caregiver, you may be faced with a situation where you’re in charge of end-of-life care. This can be a much lighter burden if you talk about what that means before it’s too late.
About the Conversation Project
The Conversation Project was founded after the founder, Pulitzer Prize-winning writer Ellen Goodman, had an open conversation with medical professionals. They had started to discuss the deaths they’d seen around them in their own experiences - discussing which of them they had considered “good” and which ones seemed “hard.” Goodman recalled her mother’s death experience. She realized only after her mother had died that she had never had these end-of-life care conversations. As a result, much of Goodman’s mother’s end-of-life decisions were left to Goodman to decide.
She decided that she wanted to start a grassroots campaign to change (or start) the conversation, making it easier for loved ones to talk about end-of-life care. It’s infinitely more valuable to talk about end-of-life wishes now, instead of in the hospital when it’s possibly too late.
How You Can Get Involved
The best way to get involved is to start talking to your loved ones. Start the conversation with your friends, parents, siblings, and children. The Conversation Project has a free worksheet available here to help you start the conversation.
Step 1: Preparing for the Conversation
Begin by preparing for the conversation - think through what matters most to you, and ask your loved one to do the same. Ask yourself questions like, “If I could choose, how would I want the last day of my life to look?” or “What is most important to me?” (Examples to answer this question could revolve around what you want to do, who you want to see, etc. - it’s all about what a high quality of life looks like to you).
Step 2: Plan the Conversation
This step is more dedicated to the care you’d prefer to receive including the depth of conversations you’d like to be involved in and what you’d like shared with whom. We recommend combing through the questions in the free worksheet. These will help you come to a conclusion on these thoughts in detail. It’s important to remember that there are no right or wrong answers here, what’s most important is getting a clear idea of what matters to your loved one.
Step 3: Start a Conversation
Decide who you’d like to have this conversation with and initiate it. It is normal for this conversation to feel difficult, taboo, or like you’re adding an unwelcomed burden on your loved one. These feelings may deter you from starting the conversation. If that’s how you feel, it’s worth remembering that having these conversations with your loved one creates a much lighter burden on everyone overall.
Step 4: Keep Talking
The conversation doesn’t need to be a one-and-done type of conversation. In all likelihood, you won’t be able to say it all in just one discussion. Keep talking. Talk to other family members or friends who may have a say in the care of your loved one.
Reciprocate the conversation, ask questions, share fears, add detail, and allow these important conversations to take up as much space as you need them to.
At some point, we will all come to the end of our lives. It is the only guarantee we have as humans. This is why talking about it - discussing details - can help to remove any fear or worries when it does come.
As a caregiver, you may be faced with a situation where you’re the one responsible for your loved one’s end-of-life care. Having the conversation before it’s too late can make this responsibility a much lighter burden to bear when the time comes. Respecting wishes helps you carry out the care confidently without worry for your loved one.
If you provide regular care to your loved one, (whether or not you’re managing end-of-life care), we at CRC Orange County are here for you. We invite you to check out our library of information for family caregivers by clicking here for further reading and resources. You are also welcome to give us a call at 800-543-8312 to find out more about how we can support you in your caregiving journey.