There’s a big gap between what Americans say they should discuss and what actually happens when it comes to one’s wishes about care at the end of life. A new national survey released by The Conversation Project reveals that while more than 9 in 10 Americans think it’s important to talk about their own and their loved ones’ wishes for end-of-life care, less than 3 in 10 have actually held these sorts of discussions.
“We have arrived at something of a sea change. Americans now overwhelmingly agree that it’s important to talk with our loved ones about how we want to live at the end of our days. Yet, we still find it hard to begin those conversations,” stated Ellen Goodman, Founder of The Conversation Project. “We need to close the gap so that people will die in the way they would choose.”
The Conversation Project was launched one year ago in collaboration with the Institute for Healthcare Improvement (IHI) to enable more people to sit down at the kitchen table with family members and friends, and talk about what will matter most at the end of their lives. Through a public engagement campaign, a web site, story sharing and other tools, the project encourages people to have these discussions long before there’s serious illness or a health crisis.
Many have taken its message to heart, with more than 62,000 downloads of The Conversation Project’s Starter Kit to date. The new survey shows there are still plenty of barriers as shown in the survey highlights below:
1. It’s always too early, until it’s too late.
a. 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%).
b. 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%).
2. Everybody is waiting for someone else to start.
a. One-fifth of Americans who haven’t broached the subject are waiting for their loved ones to bring the topic up first.
b. Yet 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.
3. When we do talk, the experience is improved.
a. 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.
b. 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.
Note: The Conversation Project started in 2010 when a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones. Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.