It’s not easy to contemplate the end of your life and consider what kind of care you do, and don’t, want when that time comes. And it’s equally difficult to talk with a loved one about the kind of end-of-care care he or she would prefer. My guess is that discussions like these are particularly difficult for us in the US, where we tend to shy away from discussions about death in general. “We Americans don’t like limits, we don’t like boundaries, (and) death is the ultimate boundary,” the journalist Bill Moyers recently pointed out. “So why talk about something we don’t want to happen?”
The answer to that question is this: As uncomfortable as discussions about what we and our loved ones want at the end of life may be, these are among the most important conversations we will ever have. Deciding in advance what care we do and don’t want, while we are able to weigh the benefits and drawbacks of our options and share and discuss our choices with those we love and our healthcare providers, can make the difference between a good death and one that is less so.
Encouraging these essential conversations—with both your loved ones and your healthcare providers—is the focus of The Conversation Project, an important new initiative of the Institute for Healthcare Improvement. I hope you’ll visit the initiative’s website, and encourage others to do the same.
The Conversation Project was the inspiration of Pulitzer Prize winning journalist Ellen Goodman, who conceived of it after her mother’s death. “My mother and I talked about everything,” she explained in a recent interview. “But when she was no longer able to make her own decisions, I realized we hadn’t talked about her wishes for the end of life. I understood only after her death how much easier it would have been if I had heard her voice in my ear as these decisions had to be made.”
Among other things, The Conversation Project website includes an extremely thoughtful and thought provoking feature, “Your Conversation Starter Kit.” It begins with some truly attention-getting statistics about what people tell pollsters they want at the end of life and, in contrast, what many of us actually get. It also includes thought-provoking questions that can help you clarify what you want, what roles you’d like your loved ones to play at the end of your life, and what your healthcare providers need to know. It also helps you figure out with whom, when, and where you want to have The Conversation, and tips for introducing the subject in a non-threatening way. Just as important, the site urges readers to take time to make these decisions, formulating them over the course of many, not one, conversation. I encourage you take a look at the starter kit and let it help you find where you want to go.