by Ellen Goodman

My mom was one of those people who could talk about your problems until you were bored with them. We talked about everything except one thing: how she wanted to live at the end of her life.

“I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made.”

 

Once or twice when we heard about a relative or friend who was comatose or on a feeding tube, she would say, “If I’m like that, pull the plug.” But, of course, when the time came there was no plug. In my mom’s last years of life, she was no longer able to decide what she wanted for dinner, let alone what she wanted for medical treatment. So the decisions fell to me. Another bone marrow biopsy? A spinal tap? Pain treatment? Antibiotics? I was faced with cascading decisions for which I was wholly unprepared. After all the years I had written about these issues, I was still blindsided by the inevitable.

The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I had heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It’s time for us to talk.

That’s why I started gathering with a group of colleagues and friends — doctors, care providers, clergy, and media — to share stories from our personal experiences of “good deaths” and “bad deaths” we had witnessed with loved ones. We talked about being faced with a cascading and confusing number of medical decisions and an uncertainty about the wishes of our parents, spouses, and friends.

And with that The Conversation Project was born, launched as a public engagement campaign on August 15, 2012, to advocate “kitchen table” conversations with family and friends about wishes for end-of-life care. Launched in collaboration with the Institute for Healthcare Improvement (IHI), The Conversation Project is a grassroots cultural movement employing social media to facilitate a nationwide, story-based public campaign. Our cornerstone is a Web site that offers visitors a Conversation Starter Kit, and asks people to submit their personal stories to be shared at theconversationproject.org, and via YouTube, Twitter, and Facebook.

The Conversation Project does not promote any specific preference for end-of-life care, nor does it advocate any political position or legislative measure. Our sole aim is to encourage and support people in having conversations and expressing their individual preferences.

We’ve already begun receiving stories from others — old and young, sick and well, siblings and friends, parents and children. These stories make it clear that having a timely conversation about one’s preferences for care toward the end of life can be an important predictor of a “good death” — one that respects those personal preferences.

Ready to talk? We’re listening.


Ellen Goodman is a Pulitzer Prize–winning columnist and a cofounder of the Conversation Project.