I spent time recently with someone I consider cool, colorful, fun, and creative. (Be Brave. Lose the Beige is a big fan of these qualities.) Now, here is the kicker…she is a hospice and palliative care nurse focusing on the ostensibly not-so-fun topic of death. Donna Gray is the voice and coordinator of The Conversation Project, a local chapter of a national organization devoted to helping families talk about end-of-life care. She says,
“If we plan by having meaningful discussions with our loved ones, a couple of important things happen. First, they will actually know what we want so they are not someday in the waiting room of an ICU wondering. Second, these conversations promote closeness. We learn things about each other, and that is always special.”
Ellen Goodman, columnist Pulitzer Prize winner, and one of the founders of The Conversation Project says:
“It’s time to transform our culture into one that does not talk about dying to one that does talk about it. It’s time to share the way we want to live at the end of our lives. It’s time to communicate the kind of care we want and don’t want at the end of our days.”
The Conversation Project believes the place for this conversation should begin at the kitchen table, not in the intensive care unit when it may be too late. I’m a statistics junkie and statistics indicate 90% of people say that talking with their loved ones about end of life care is important, but only 27% have actually done so. 80% of people say that if seriously ill, they would want to talk to their doctor about their wishes for medical treatment toward the end of their life, but only 7% report having had that conversation with their doctor.The Project has developed a Conversation Starter Kit, which helps families jump-start the process of talking about a potentially difficult conversation.
Steps in this kit looks like this-
What’s most important to you as you think about how you want to live at the end of your life? What do you value most? (Thinking about his will help you get ready to have the conservation.)
Now finish this sentence: What matters to me at the end of life is…
They even include ice-breakers to initiate the conversation, such as…
“I need your help with something”; I was thinking about what happened to Aunt Stella and it made me realize….”
Talking about the way we want to live at the end of our days is what I found most compelling about the mission of The Conversation Project. It introduces an element of hope into an otherwise potentially morbid situation. Creativity is at the core of Be Brave. Lose the Beige. Before talking with Donna Gray I had not considered that the end of our days could be lived as creatively as our earlier ones. If our goal is quality of life (life being the operative word here) then find a strategy to manage the pain and still be able to play the guitar or watch football and eat ice cream. (Atul Gawande’s book Being Mortal eloquently addresses this issue).
I broached this topic with my daughter. Tracy immediately curled up into an emotional fetal position saying “Noooo! We are not going there! I experienced first hand how difficult this potential conversation will be within my own family. Thus, a Starter Kit is obviously helpful, or as Donna Gray says, “It’s always too soon until it’s too late. Hope is not a plan”.