Article Series

It’s always too soon to have the conversation until it’s too late

Article submitted by Kim Mooney, Director of Community Education for TRU Community Care (formerly HospiceCare of Boulder and Broomfield Counties). To learn more about The Conversation Project visit their website and download a copy of “The Conversation Starter Kit.”

“It’s always too soon to have the conversation until it’s too late.” Confused? According to Ellen Goodman, Pulitzer-Prize winning journalist, we often look at and talk about end-of-life care and dying in this perplexing way. It’s easy to say that we’re a death-denying society. And as we find ourselves needing end-of-life care, it’s important to recognize the complexity of our medical system, and to understand how our declining health can affect the choices we make.

But it all begins with taking a deep breath and deciding to share our personal stories about dying – our fears, our hopes, our choices. “We know that everyone has a story of a good death or a hard death, and we know that the difference between those two stories is often whether they have had the conversation,” elucidates Goodman.

Ellen Goodman started The Conversation Project in 2010 after caring for her dying mother. She realized that families often do not know what kind of care a dying person wants. This past May, her Conversation Project launched in Colorado to an auditorium of hundreds of people, including end-of-life educators and caregivers. Goodman explained how the project provided opportunities for people to stay in charge of their life. She discussed research on preferences and realities in end-of-life situations. (Sixty percent of people say that making sure their family is not burdened by tough decisions is “extremely important.” But fifty-six percent of respondents say they have not communicated their end-of-life wishes.)

During her Boulder presentation, Goodman’s assistant led the standing-room only audience in exercises to help them share their stories and values. One of these was “What can you imagine not wanting to live without?” Participants reported surprise at the impact of Goodman’s simple questions and the personal consequences of their responses. One audience member had her own epiphany. She concluded that although the conversation was about death, her own life values were guiding her choices.

Two aspects of the Conversation Project make it particularly powerful: its focus only on “the conversation” (not on completing advance directives or other medical or legal documents), and, its intention – to allow ordinary people to talk to their families and friends without the involvement of medical professionals. These make it one of the most accessible and potentially, one of the most successful advance care planning movements in the US.

For some families, this open conversation is not a difficult thing to do – they just hadn’t thought about its importance or they just don’t know what to say. In that case, The Conversation Project website has a very easy-to-use Starter Kit to help people think about and practice dialogues like the one in her Boulder presentation. Once people understand what kinds of questions they need to consider, it’s not unusual for discussions to unfold right away.

Sometimes, however, it is difficult for families to sit down together over this topic. It can be frightening. We don’t want to think about a world without our loved one. We sometimes like to imagine that we aren’t close to dying (how do we know?!?!?!?!?!) OR that we won’t die at all! When you start to talk about your death personally, not death abstractly, you discover you have all kinds of attitudes and suppositions and hopes that you never named before.

And that’s the goal of the conversation – to recognize and name the choices you want or don’t want when the focus of your medical care is changing, and to make sure that the people who love you and will be part of your support team really understand those choices. If a time comes when you can’t speak for yourself, you will have people who know you to speak in your voice.

Visit the website to learn more or to download a copy of The Conversation Starter Kit.

© 2013, All Rights Reserved by Kim Mooney, TRU Community Care

Posted September 2013 on