It's one thing to know deep down you really should talk about death far before it happens; but it's a very different thing to actually converse about the details of dying with the people you love.
That "disconnect" — between what you want and what you do — is the key finding from a new survey by the folks who launched The Conversation Project, a national effort to get people talking about the nitty gritty details about end-of-life care.
The survey found that 90 percent of Americans know they should have the "death conversation" but only 30 percent have done it. (One person who has done it is CommonHealth co-host Carey Goldberg; you can listen to her conversation with her 86-year-old father here.)
Here's what Ellen Goodman, founder of The Conversation Project, said via email:
“I'm pretty amazed that 90 percent of Americans agree on anything! Ten years ago, we didn't yet realize that having conversations about the care we want at the end of life was ‘important.’ Now we do. That's tremendous progress.”
“At the same time, the survey shows that only 30 percent of Americans have actually had these conversations about end of life. So there's a big gap between what we know and what we do. We are still reticent to start these conversations. We think that it's too soon, and we wait for the other person to start talking. So our goal is to help people to close the gap. If you’re reluctant, you aren't alone. If you know you should talk to the people you love before it's too late, you are in the 90 percent! The Conversation Project has the stories and the tools that can really help.”
Why is it so hard to have these discussions? Here's more insight from The Conversation Project (which was launched in collaboration with the Cambridge-based Institute for Healthcare Improvement) news release:
There are a host of reasons why Americans haven’t discussed their own wishes. Top reasons from the survey include:
--It’s not something they need to worry about at this point in life (29%), they aren’t sick yet (23%)
--The subject makes them feel uncomfortable (21%), or they don’t want to upset their loved ones (19%).
--Similarly, among those who haven’t talked about their loved ones’ desires for their final days, top reasons for avoiding the conversation are “it never seems like the right time to discuss it” (25%) and “it isn’t something they need to worry about at this stage in their life” (21%).
Everybody is waiting for someone else to start.
--One-fifth of Americans who haven’t broached the subject are waiting for their loved ones to bring the topic up first.
--Anxiety over initiating the conversation is unnecessary, as nearly half (48%) of Americans say that if a loved one asked them about their wishes for end-of-life care, they’d welcome it and be relieved to discuss it.
--Another 41% admit that while it would be a difficult discussion to have, they’d be willing to do it.
When we do talk, the experience is improved.
--More than half of those who have lost someone without ever discussing end-of-life wishes admit that some aspect of the experience could have been improved if they’d had a conversation.
--Those who did have such a conversation had what could be considered a more positive experience in their loved ones’ final days – 63% say they felt better knowing they were honoring the wishes of their loved ones, while 39% know their loved one was able to die just the way they wanted.
This program aired on September 19, 2013. The audio for this program is not available.