Is it important to talk about end-of-life concerns with older adults before they become incapable of expressing their wishes? Yes.
Do Americans have these discussions as regularly as they should? No.
A new Boston-based enterprise, The Conversation Project, is hoping to change that by offering a new set of resources to families interested in addressing end-of-life issues. Pulitzer Prize winning journalist Ellen Goodman is one of the movers and shakers behind the effort, and the Institute for Healthcare Improvement is a collaborator. (See a write-up of the effort by Kay Lazar of The Boston Globe here.)
One of the strengths of The Conversation Project is its emphasis on the power of personal stories to inform individual family’s discussions as well as the national debate over end-of-life care. A section of its website solicits stories and plans to publish them in the future.
Even before that happens, reporter Carey Goldberg decided to share a Conversation Project-style talk with her dad in a very public venue, Boston’s NPR station. It’s an example of a journalist leading the way by example, as Ellen Goodman did in launching this project.
Goldberg and her family had lived through a terrible trauma many years earlier, when her mother was left in a persistent vegetative state after a car accident and then died when the family arranged to remove her feeding tube. It’s the kind of experience that marks a person for life.
What did Goldberg learn from having this conversation with her dad? This is what she says on CommonHealth, a blog on WBUR’s website:
“I have to admit that I kind of dreaded it. But I ended up finding it surprisingly comforting. I’d thought this was something I was doing for my dad, to get clear on his wishes. But in the process I learned that he was doing it for me. That he wanted to make sure I came away from his ending without guilt, knowing that though he didn’t want to die, he didn’t fear it.”
“I also learned some things I didn’t know. I learned that he’d very much like to have my children, who are 8 and 10, at his deathbed if they’re willing. If their beloved faces were the last thing he saw in this life, he said, that would be a good way to go.”
“And I learned that he and I just have very different attitudes toward death. I think death is followed by a great big nothing, and I’d rather have just about anything than nothing. At 85, he feels like he’s ‘had a life;’ he only wants to stay longer on his own terms – a feeling that he tells me is hard for a younger person to imagine. True.”
What can other reporters learn from Goldberg’s account of her conversation with her dad and perhaps share with readers, listeners and viewers interested in similar conversations?
Very specific questions are more likely to yield very specific answers than general, open-ended queries.
Follow-up questions seeking clarification – “you mean fully paralyzed?” – are called for when there’s even a hint of uncertainty.
Even a highly experienced reporter has to work to make certain that what is clear in someone’s mind has actually been expressed clearly and without ambiguity.
What may seem like a blanket statement may be modified, importantly, under sensitive and close questioning. The trick is knowing when that kind of questioning is called for – and pressing ahead.
Personally, I was struck by the loving quality of Goldberg’s conversation with her father. Listen to Goldberg’s interview on your own, see what thoughts and impressions you pick up from it, and share your thoughts below if you’re inclined.