What music do you want to be listening to on your last day alive?
If only one story is told at your memorial service, who should tell it?
If you needed help going to the bathroom today, who is the first person you would ask for help?
These are difficult questions to think about, much less answer and document. For the over 125 advance care planning advocates attending our annual conference, there was commitment to finding the right way to broach those conversations, the sooner the better.
Charlotte S. Yeh, MD, encourages facilitators to ask the hard questions and to truly listen to the answers. But it’s sometimes hard to summon the right words that will spur them to think about ACP in a non-threatening way. “Today’s language is agreeable, but it’s not always motivating,” she told participants at Honoring Choices Virginia’s 2018 Community Learning Collaborative. The event explored “The ABCs of ACP: Why the Words We Use Matter.”
Through her work as chief medical officer for AARP Services in Boston as well as an emergency medicine physician, Yeh said she’s learned that subtle shifts in language can help guide patients through thinking and planning. “We don’t have to convince people that it’s a necessity,” she explains. “They understand that.” The trick, she says, is getting people thinking of it as a priority.
While people often think ACP is something only needed for the elderly (a term many disdain) at the end of life, Yeh says facilitators should consider saying it’s needed “in the event of an accident of illness that may make it challenging for you to think clearly.”
“It’s for everybody at any point at any time,” she says, emphasizing that ACP is appropriate for any adult, even as young as 18. “You can say that it’s not a final decision, that you can always change your mind. You may not know what you want, but you might know what you don’t want.”
One way to make it easier is to incorporate a family’s trusted spiritual leader or community partner into ACP. During a panel discussion, HCV’s partners from religious and community organizations shared ways they’ve successfully initiated dialogues. Herbert Ponder, M.Div., pastor of Mount Tabor Baptist Church, noted that he often is called to assist families at end of life. But with HCV training, he said, he’s becoming more proactive about early discussions, including holding a weeklong “vacation Bible school” program to teach about planning.
Different populations – young or old, indigent or wealthy, educated or not – require different approaches to discussions. “The language we use is so important,” noted Richmond Health & Wellness project coordinator Kathie Falls. “We need to use words that are meaningful.”
Tackling those conversations in places where patients are at ease is important for facilitators, community organizations or even physicians, notes Richard Szucs, MD, chair of the Honoring Choices Virginia Advisory Board. “This is a culture change, and we’re all in it together.”