Community Sparks
What brings thousands of strangers together to talk about death — and what holds them together? An inspiring group of community leaders who have dedicated their lives to the topic. Here are two of their stories.
Most of us can’t remember the last time we had a frank conversation about the end of life — much less brainstormed about it with strangers around the world. But that’s exactly what OpenIDEO’s End of Life Challenge set out to do.
The Challenge had a strong advisory board and great sponsors behind it, but the community who participates is always the core. It takes a team of sensitive and committed individuals to build connections, foster intimacy, and support participation in meaningful ways.
For Jim Rosenberg, the idea resonated immediately. The D.C.-based innovation strategist had previously participated in OpenIDEO’s Higher Ed Challenge. “Education—the way we adjust and how we learn in the world—is something I’m really fascinated by,” he said. “I thought ‘Okay, this is my chance to jump into the IDEO model and really see how it works.’”
When the End of Life Challenge rolled around, he took on a community activator role. The topic was close to his heart, and he wanted to share the value human-centered design offered to develop solutions at the end of life.
Morgan Meinel, a palliative care nurse at New York’s Mount Sinai Hospital, was participating in an OpenIDEO Challenge for the first time.
“From a very young age, I was always interested in comfort, particularly in death and dying,” said Morgan.
“I was so glad to see people getting the community involved, talking about it in a more open and supportive way to try and figure out solutions,” she added. To her, death is the ultimate inclusive experience: it made sense that people would come together around it , forming a community in hopes of designing change.
That community — made up of doctors, designers, nurses, artists, researchers, musicians, students, filmmakers, and more — operated with vulnerability and productivity. It has an enviable positive energy, Jim says. “But that doesn’t mean everybody just pats you on the back and says ‘Oh, what a great idea!’ when they actually don’t agree.”
Participants are keen to draw from their diverse experiences to help build on the ideas of others—a core value of OpenIDEO. “It’s just this very goal oriented, positive way of talking about ideas,” Jim adds. “A lot of offices aren’t like that — and a lot of folks don’t have a community outside of their offices like that.”
This culture showed up in many of the Challenge’s ideas, like music composed for the dying or respite for caregivers, which aimed to make death less isolating for patients and their loved ones.
Morgan was browsing the Challenge when she ran into an interesting question: What’s the last sound you want to hear at the end of your life? It’s the query at the heart of Sound Will, an idea created by ambient electronic musician Yoko K. Sen to address the hostility of hospital sounds. Being hooked up to monitors and surrounded by hospital sound during an extended stay gave her a long time to consider what she’d like to change. Florence Nightingale once said that “unnecessary noise is the cruelest absence of care.” Yoko agreed, and wanted to tackle it in hospitals.
That idea got Morgan thinking. When she took a patient off a respirator for the last time: what did they hear? Was a tangle of beeps and alarms the way to go? She and her coworkers began playing music for dying patients when they took them off life support. It changed the experience for her patients, their families, and caretakers—including Morgan. She got in touch with Yoko to share the experience, which was pivotal for Sound Will’s evolution.
The concept applies to her hospital ward as well. “Before a patient died recently, our priest asked, ‘Do you have a religion? Do you have a spiritual path so we can support you?’ And he was like, ‘James Taylor.’ So we played James Taylor for him!” Already moving into his final delirium, the man smiled — and began to sing.
“After the challenge, I feel like my mind has just opened up so much. I can see it through a much wider lens: the totality of someone’s experience at the end of life.”—Morgan Meinel, palliative care nurse and OpenIDEO community activator
There are many other examples from the Challenge where one community member was inspired by another’s idea — called cross-pollination in design. The community response to Vykarious, for example, showed its creator that her idea could be useful not just at the end of life, but for any individual experiencing physical limitations.
Jim’s idea was born out of the worst experience of his life. His wife Amy had cancer and died four months after diagnosis, leaving him with an infant and a massive sense of loss. He found solace in a local young widow and widowers group.
“I remember talking with a younger guy whose wife had just died,” he says. “Their baby had just turned one—it’s exactly the same situation I had been in, but I was two years later.” Jim gets reflective. “It struck me how good it felt to be in a community of people who knew what you were talking about, and just tell your story. We often joke that it’s kind of nice being able to laugh about stuff too, because if you — maybe you tell the dark side of the story to people who have never been there and they think, ‘What? What the heck is wrong with you?’ But this is what it really looks like.” The resulting Top Idea, I Know Something About This, aims to crowdsource hard-won knowledge on coping with loss.
This became a rallying cry for the community: acknowledging the joy, pain, fear and celebration of an experience that will happen to all of us.
“It just reminds you that you’re not completely crazy,” Jim adds. “There’s somebody else out there who also thinks this could work. Sometimes it’s that pat on the back that gets you to go, ‘Okay, I can do this again. I can roll the ball a little bit higher up the hill.’”
Read more stories about the people, ideas, and moments of OpenIDEO’s End of Life Challenge.
Learn more about I Know Something About This. Got questions? Drop us a line in the comments below.
