BJ Miller: Somatics and Story
What really matters at the end of life, and how can we design for it before we go? I sat down with Dr. BJ Miller to find out.
BJ Miller is a titan in the field of palliative care. Currently an assistant clinical professor of medicine at UCSF, BJ served as executive director of Zen Hospice Project for several years. He was also instrumental in the conception and launch of the End of Life Challenge, and served on its advisory panel.
I was curious about why he felt open innovation could be powerful on this topic. “Death is this ancient subject; there’s all this pent-up energy around it, and people are filled with ideas,” he tells me. “But there’s been nowhere to put them. I was thrilled that the Challenge was supplying a big piece of Velcro, to coalesce and collate.” Velcro or not (bad pun alert!), the idea stuck. Over 90 days, more than 15,000 people engaged with the Challenge.
Our sponsors, notably Blue Shield and the HELIX Center, often speak of redesigning the end of life as a movement. Would Miller agree? “In the circle of people I know, and in the Bay Area, there is a lot of activity. It does feel like things are moving. Everyone’s primed and tenderized and opened up.” It’s unsurprising to couch this in the language of the body.
Throughout the Challenge, time and again participants returned to storytelling and somatics — how we want the end of life to feel, and how we talk about it. “The world of the senses has been orphaned for a long time by healthcare,” says Miller. “So there’s a lot of pent-up energy specifically around what it feels like to be a patient: to navigate the system and go through illness, and even dying.” From what a hospital smells like to the way a room looks to the last sounds we hear, we experience the end of life through our bodies.
There seems to be a groundswell around the topic, of which IDEO is one small part. I asked whether it felt like new answers were emerging for some of these old questions. “There’s definitely a feeling of new bed partners coming together: design and healthcare, open innovation and healthcare. But beyond the Bay Area and California, I don’t know the answer to that question. We’ve got some reifying to do.” That reification is often pioneered by entire communities; La Crosse, Wisconsin is just one example.
Much of the taboo aspect of death is driven by a fear of talking about it. Normalizing those conversations is crucial to changing the experience; by its nature, human centered design can offer elegant solutions to smooth the way. “People’s idea of design, as a rule, still has to do with stuff,” says Miller. “So the world of the senses, the material world, remains a central piece of the puzzle.” Death is an intimate, embodied (and inevitable) part of being human. By reconnecting it to the body, we bring death back into life.
Read more about how BJ is pioneering a new model of human-centered palliative care in The New York Times Magazine.
Read more stories about the people, ideas, and moments of OpenIDEO’s End of Life Challenge.
