Americans don't talk nearly enough about death, and that causes a host of problems at the end of their lives.
A Philadelphia design group is trying something unusual to get people to open up before it's too late: a card game.
Its project - a deck of 47 sky-blue cards called "My Gift of Grace, a Conversation Game for Living and Dying Well" - uses questions to get friends and family talking about funerals, disability, forgiveness, and philosophy. Players don't know till the very end whether they will win by expressing gratitude or earning it.
"I just love the fact that they're using this creative medium, a game, to foster conversations in a reasonably lighthearted and certainly very supportive way," said Ira Byock, a nationally known palliative-care expert whose most recent book, The Best Care Possible, is about end-of-life care. Byock was among 436 donors who pledged a total of $41,338 at Kickstarter to get the game off the ground. He also can take credit for the tagline and its mention of life in addition to death.
Byock likes the fact that the game, which was created with input from local palliative-care physician Karl Ahlswede, doesn't just ask about pain and suffering, as many legal documents do. It also asks about positive experiences that can give meaning to our last months. "What I like about this game is that it's really focused on the personal, experiential side of caring for another," he said.
The cards are the work of Action Mill, which describes itself as a "human-centered design firm." Three partners - Jethro Heiko, 40, whose background is in "bereavement and community organizing"; Nick Jehlen, 42, a designer; and Rob Peagler, 48, whose previous work was in design and strategy - along with Georgia Guthrie, 30, a designer, created the game.
Jehlen said the group, which tries to find ways to express complex ideas tangibly and practically, is now focusing entirely on improving conversations and decision-making late in life.
My Gift of Grace was a winner in the California HealthCare Foundation End-of-Life Challenge. Action Mill started shipping decks to its backers this month and is now taking orders online.
Action Mill, with a quirky office just north of Chinatown, had previously done work for the State of Vermont and the Alaska Wilderness League.
For the Alaska job, it had 12,000 students and teachers flying kites representing migratory birds to help those in the lower 48 understand that some of our avian visitors were born in Alaska. The league's executive director, Cindy Shogan, said her group was still using some Action Mill ideas and that its campaign "inspired positive actions across the country in a fun, approachable, and positive way."
After interviewing many people who work with patients at the end of life, Action Mill decided this was fertile ground for its inventive approach. "There's a huge need," Heiko said.
The company did not set out to create a game. The principals thought about what's going wrong now. End-of-life planning centers around living wills and who gets medical power of attorney. It can feel uncomfortably formal and legal.
"If the challenge is conversation and people aren't having it," Heiko said, "don't give them a document. Give them a conversation."
The group first thought about where families talk: the kitchen or dining room table. It then thought about activities that facilitate conversation and are familiar. That's when the thought of cards began.
The cards are numbered. They are written in simple language, but the questions are not simple. Some examples: "Think of the last disagreement your family had. How was it resolved?" "If you had one day to say you were sorry to anyone you wanted before you died, who would be first?" "Write your own epitaph in five words or less." There are practical questions, too, about cremation vs. burial, who should get your stuff, what you'd like in the memorial service, and whom you want to make decisions if you can't.
Everyone answers the same question at the same time and shares the answers if they want. The game ends when the players want it to. Peagler said most games last 90 minutes to 21/2 hours.
Players can share one deck and write down their answers. Or, in the "deluxe" version, each player has a deck and writes answers on the cards. These can then be left for family later. A single deck - made entirely in America - costs $24.95. Bigger orders are $19.95 a piece. The online store is at http://actionmill.com/.
Players give gratitude chips to reward answers they like.
It doesn't sound very competitive, but the Action Mill folks say people can get pretty excited about those chips. As for whether dysfunctional families should steer clear, they said most groups can handle these topics. "This is safer than Monopoly," Peagler said.
Guthrie, the youngest member of the team, said she was not all that thrilled about the Action Mill's new emphasis on death. Then she talked with Ahlswede, who said that if her family did not know her wishes and had to make decisions for her, it might suffer emotionally and financially.
Before that, she'd thought of advance-care planning as being for herself. He made her realize it was for her family.
Is the game fun? The designers say there can be tears, but that people also enjoy the conversations.
"I haven't been in a game yet where there hasn't been laughter," Jehlen said.
He said that players like the challenge of it. "People get enjoyment from tackling difficult things and especially from tackling difficult things together," he said.
Jehlen said that one unexpected benefit is that learning to talk about the difficult subjects in the game had helped him confront other problems and had changed his perspective. "It's improved our lives immediately and continues to," he said.
Byock thinks that many people have a "veneer of denial and avoidance" when it comes to discussing death, but inside, they're actually quite eager. Sharing their thoughts, he said, can help them and the people they love.
"It truly is a gift to give one another," he said. "The conversation itself is a gift that will keep on giving at some of the most difficult times."