The Conversation Project in Utah

By Katherine Pioli

Begin “the conversation” at the kitchen table-not in the intensive care unit

When Bostonian Ellen Goodman began making end-of-life care decisions for her mother, she felt unprepared for the cascade of issues she
had to face: another bone marrow biopsy? Pain treatment? Antibiotics? On top of that, Goodman wasn’t sure she would make the decision her mother would have wanted her to but, like many people, Goodman had never had a serious conversation with her mother about end-of-life care.

Now, it was too late and Goodman had to do her best. “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. If only we had talked about it,” writes Goodman.

Shaken by her own experience, in 2010Ellen Goodman (an acclaimed journalist and the author of seven books) started The Conversation Project, an initiative in collaboration with the Institute for Healthcare Improvement, as a way to help other people avoid the same difficult situation.

With a deep awareness that too many people are not dying in the way they would  choose, and too many survivors are left depressed,guilty, and uncertain whether they have done the right thing, The Conversation Project encourages and supports people in expressing their wishes for care. As Goodman says, “All too often we focus on the question,’What’s the matter with you?’ when we should be asking, ‘What matters to you?’”

Seven years later, regional Conversation Projects exist throughout the country.

The Conversation Kits act as a guide with questions and suggestions that help you decide when, how and where to start a conversation with your family. They are available online,free to download.

If you’re not ready for a conversation just yet, that’s okay. The first step in the starter kits is to just think about what a conversation might sound like or start by writing a letter addressing the issue to a friend or loved one.

It’s important to know, as you approach your family, where you stand on certain issues regarding your care. Do you want to know only the basics about your condition and treatment,or do you want to know all the details? Do you want to receive medical care indefinitely, no matter how uncomfortable treatments are, or is quality of life more important to you than prolonging life? Would you mind spending your last days in a health care facility, or do you want to spend your last days at home?

Another important topic when going through these decisions is deciding who exactly will be involved. Who do you want to talk to (parent, partner, child, priest/rabbi/imam,doctor)? And, once you’re ready to start the conversation, where would you feel comfortable  talking (kitchen table, on a walk, sitting in a park, at place of worship)?

Once you are ready to start a conversation,you’ve decided who should be there and when and where it will take place, it can still be difficult just getting the words out. So The Conversation Project suggests some lead ins to conversations like:

“I was thinking about what happened to (BLANK), and it made me realize…”“I need to think about the future. Will you help me?”.

Even after you and your family have talked through and agreed upon care-giving and end-of-life decisions, there are still other ends to tie up. The Conversation Project reminds us that families should also be thinking about what affairs need to be gotten in order (personal finances, properties, relationships). And above all: Be patient; every attempt at the conversation
is valuable.

This article was originally published on October 4, 2017.