Call and Response
Why fund a global design challenge around death? Our partners explain what drew them to the topic, and what excited them about finding new ways forward.
OpenIDEO partners with leading organizations to drive collaboration, innovation and impact around the world’s toughest problems. We do this by launching Challenges, programs, and other efforts. A Challenge is a 3–5 month collaborative process that focuses attention on a specific issue and creates a space for community members to contribute, refine, and prototype solutions.
Here, we spoke to three individuals who were instrumental in getting the End of Life Challenge off the ground. They are Chris Waugh, Chief Innovation Officer at sponsor Sutter Health; Ken Rosenfeld, advisory board member and palliative care physician; and Shoshana Ungerleider, whose Ungerleider Palliative Care Education Fund also provided Challenge sponsorship.
What has excited you most about the Challenge experience?
CW: What excites me the most about the challenge is the 89 countries that have contributed. Northern California is inherently diverse, but to have that level of interest sparked is symbolic of the kind of pent-up need for this dialogue, craving of creativity in this particular category. What’s exciting about OpenIDEO is that who’s getting involved is as cool as the conversation that’s been developed. There were some great concepts around getting to know the patient as more than just a person with a condition that’s lying in a hospital setting or in a palliative care setting of any sort.
Then one that’s outside the clinical setting would be Vykarious—that’s one of my favorite ideas of the entire platform.
It has a universal human truth to it that people can really relate to. You’d really have to squint to see it show up in a clinical setting, but we’d love to see that happen. It’s a foreign object in that setting, and that might be exactly what’s needed.
What initially drew you to the challenge, and what excited you about the experience?
SU: I personally think that the shift in how we practice medicine will really come from a public movement, as opposed to from within the healthcare system. It’s really difficult to change anything within the system at a reasonable rate, and I just think it’s going to come from a consumer push in demanding better around this particular topic. It’s been really wonderful to engage people outside the healthcare community, which was a goal of the Challenge and something OpenIDEO was able to harness.
“I’m really encouraged that so many people are interested in and caring about this topic, and interfaced with the design challenge in some way. It was just a really exciting three months of energy.”
What first drew you to the Challenge?
KR: It’s an odd coincidence. I was at the National Palliative Care Meeting in Philadelphia about a year and a half ago, and I got a text saying that Paul Bennett (chief creative officer of IDEO — check out our interview with him here) wanted to do an OpenIDEO Challenge focused on the end of life. Might I be interested in being involved? Then Jason texted me and asked if I knew a guy named BJ Miller (executive director of Zen Hospice — check out our piece on him here, or his popular TED Talk here).
I texted back saying ‘Well, kind of — I’m actually walking out to meet him for dinner right now.’
So BJ and I got talking. We both got excited about the possibility and we happened to be at a conference with 3,000 other people in palliative care. I approached a core group of out of the box thinkers and national experts, and by the time the meeting had ended, half our advisory panel was already in place.
What are your hopes for your own death?
SU: It’s a great question. In our program, we ask our first-year residents to think about their own death. Which at age 27 or 30 is kind of a weird question if you’re healthy, but really important. You just get this deer in a headlight moment where they’re like, “you want me to think about WHAT??”
I think it’s a question that people should be asking themselves at various points throughout their lives, because it can change.
Interestingly, most people really aren’t afraid of dying. They’re afraid of being in pain.
For me personally, I don’t know exactly the setting, you know? But absolutely surrounded by people that I love, and as comfortable as possible. I think comfort is huge.
In several of your challenge ideas, Ken, narrative features quite strongly. What’s the importance of story in the end of life experience?
KR: A serious illness, or the end of life, does not happen in isolation. It is a chapter in people’s lives — typically, the final chapter. But it’s very hard to take an event in isolation and find meaning in it without understanding the full story, the chapters that have come before it.
And if one wants to deliver high quality medical care and a meaningful personal experience, it has to be woven into that individual’s life story. That story is their personhood.
By expressing interest in personal stories, and elevating them: it’s elevating the person behind the story. It’s showing them reverence, and respect. I think storytelling and dying are a natural fit. I’m not a historian, but I’m sure that for millennia, life and death and storytelling have all gone together.
You’ve mentioned the value of storytelling. Obviously I’m biased, but what do you feel is valuable about storytelling at the end of life?
CW: I think story is the way in. It’s the most underutilized resource to create the conversation; to share what’s working, to share what’s not working. Story is our cleanest form to create understanding. To create a dialogue, and a warm welcome, to this conversation and many conversations. So it’s also an amazing tool for care itself.
If you watch human behavior, it’s seeking story for others that are going through something similar to what they’ve gone through. I think you and I would violently agree that storytelling is often underutilized and under-recognized as a communication mechanism, as an intellectual understanding mechanism for what happens. And to tell that through the emotions, rather than just the logic, is the best tool that I believe we have.
Is there a story about death you’d like to share?
KR: When I was doing my residency, right around the time I was becoming more interested in the experience of people who are dying: my grandmother died. She died very badly, and in a manner that could have been different. In that moment I was far away, in the middle of a medical residency. And I was helpless. There was not a damn thing that I could have done. My hope is that twenty years from now, other people will be able to tell a different story about their grandmother. One that better fits the narrative of the life that they lived.
Read more stories about the people, ideas, and moments of OpenIDEO’s End of Life Challenge.
