White Coat Notes

Most want to discuss end-of-life care with family but few do, survey finds

There’s a yawning gap between what people say is important to discuss about death and dying, and what actually happens, a new survey finds.

Ninety-four percent of those queried said it was important to have a conversation with their loved ones about their wishes for end-of-life care, yet fewer than a third have actually held such discussions, according to the survey commissioned by The Conversation Project, a national campaign aimed at helping spur discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

“That’s pretty remarkable because 90 percent of Americans don’t agree on anything,” said Ellen Goodman, project co-founder and a former Boston Globe columnist.

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“I think there has been a huge sea change in the number of people who have been thinking about this subject,” Goodman said. “I think if you had done this survey even five years ago, there would have been a large number who would have tossed off the subject as not important.”

Women were more likely to have broached the subject, as were people 55 and over, according to the national online survey of 1,067 Americans conducted in July.

Why have so many people put off such discussions?

Roughly a quarter of those who indicated they hadn’t had a conversation said they weren’t sick yet, so they didn’t think it was necessary. About one in five said they didn’t want to upset their loved ones, or that it “never seems like the right time to discuss it.”

Seventeen percent said they didn’t “know how to start the conversation.”

The Conversation Project, launched one year ago in collaboration with the Cambridge-based Institute for Healthcare Improvement, offers a free, online “starter kit” on the project’s website to help jumpstart end-of-life discussions.

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.”

Project leaders say that their starter kit has been downloaded more than 62,000 times in the past year, but that their survey findings suggest plenty of work still needs to be done.

The survey, conducted in two parts, queried an additional 1,006 people in late August and early September about their feelings regarding end-of-life conversations after the death of a loved one.

Roughly half admitted that they failed to have such discussions.

“The big task now is to help people who are ready but reluctant,” Goodman said.

Among those who said there was a conversation before their loved ones passed away, nearly two-thirds said they felt better “knowing I was honoring my loved one’s wishes.” Slightly more than a third said they were able to focus all of their energy on spending quality time with their loved one in their dying days, because they had already figured out their care.

And roughly 40 percent said their loved ones were able to die “according to their own wishes.”

The survey, conducted by Kelton, has a 3 percentage point margin of error for both parts.

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