‘Gaming’ death: how to make end-of-life planning less heavy

A Philadelphia design firm is using a card game to spark difficult conversations about death that don’t lose focus on living.

Let’s face it.  Talking about death is an uncomfortable topic. But a Philadelphia design firm, The Action Mill, created a game to change all that.  It’s called My Gift of Grace.

“It’s a game that helps people talk about what’s important to them, how they think about their life and their own mortality,” said Jethro Heiko, a partner with The Action Mill.

In My Gift of Grace, players ask each other a series of questions and write down their answers on a piece of paper. When everyone has laid down their pen, they share answers. Particularly thoughtful answers get rewarded with “thank you” chips from the other players. Winning or losing is arbitrary; a coin toss at the outset of the game determines whether the person with the most or least chips at the end of the game is the “winner.”

The goal? To get people talking about death, with an eye towards how they want to live.

Last week, about 35 people gathered in a room at Chandler Hall, an assisted living facility in Bucks County. Leaning over plates of Doritos and turkey wraps, they all came to talk about one topic: the end of life.

Grace in action

At Chandler Hall, tables of three or four groups played My Gift of Grace for just under an hour. Luz, Dolores, and Alice, all from Bucks County, became so engrossed in the game that they put down their pens and blurted out their answers to questions like: What would you like done with your body after you die?

“If I have any organs worth saving, they can have them,” said Alice.

“But we’re old, who wants ’em,” said Dolores. She continued, “I don’t want to have an open coffin. I don’t want a viewing. I want to be taken right into the church, closed coffin, say a mass, and take me out.”

Luz was less certain about her wishes “I don’t know at this point what I really want,” she said, laughing. “So I think I’m just going to wait until the last minute and in my last breath say to the kids, ‘Here, do what you want to do with me!'”

Other questions focused less directly on the end of life, and more on lived experience. At another table, Tom, James, Tom and David answered question 15: What are you no longer embarrassed about?

“It’s easy for me, I’m no longer embarrassed about being naked,” said Tom Cadwallader of Yardley, Pa. 

He was not alone in losing physical shame. “I’m no longer embarrassed about my weight, my appearance, or most things that I say,” said Tom Smith, of Abington, Pa. 

At another table, several caregivers gathered to give the game a spin. Tim Cousounis, senior director of Hospice and Home Health at Chandler Hall, picked the question: How old were you when you first realized you’d eventually die?

“A lot of silence on that one,” said Tim.

“I guess I just don’t think of us as dying,” said Betsy Paine. “Maybe I haven’t found out yet! Maybe it hasn’t happened yet.” The rest of the players at the table nodded.

Betsy selected the next question: if you could write a note to people who cared for you at the end of your life, to be delivered one year after your death, what would it say?

“It’s unoriginal but I can’t think of more to say besides, ‘thank you!’,” said Kyle, who started a business to help people pre-plan their funerals.

Filling in the gaps

It’s not just seniors who are taking an interest in these conversations – researchers also want to see if “gaming” death can lead to better end-of-life decision-making.

“People have a hard time talking about this and we started looking at new approaches and new innovations that can help start the conversation rather than just perhaps sitting down over a legal document,” said Lauren van Scoy, a researcher at Penn State Hershey who studies end-of-life care.

She finds that the dry legal documents people have to confront when planning end of life care are off-putting – and that they miss a lot.

“Advance directives are excellent documents that are very useful but they also have important limitations and often there are many barriers that prohibit them from being completed. One of those barriers might be that people don’t want to talk about this and put it off,” said Van Scoy. “That’s what we hope My Gift of Grace will help overcome.”

Van Scoy has started researching how different aspects of the games may quantifiably impact outcomes around end of life care and what decisions they make. And she says the game helps put people at ease with a difficult topic. “So far from my observations of these games clinically, there hasn’t been a game yet where there hasn’t been laughter,” said Van Scoy.

Grief therapist Kendra Stenack has similar hopes. “There’s a lot that goes unsaid until the end of life.” Stenac thinks the game is a good tool to help families start talking themselves, without the prompting of a social worker or medical staff. “We usually facilitate these conversations, but it would be nice if families could do it for themselves and with privacy,” said Stenack.