Of life's taboo topics, death has always been the most perplexing. Although we are all effected by death's slow creep or sudden onslaught, in the United States there is little formal consideration paid to how one can prepare for the end of life. In 2013, IDEO began exploring ways they could have an impact on how people approach their final days. As Paul Bennett, Chief Creative Officer of IDEO told The California Sunday Magazine, he had a simple vision for the work IDEO could do: "I don't want death to be such a downer."
As part of IDEO's ongoing investigation into new ways to design for death, they recently opened up the conversation with a design challenge on OpenIDEO, an online innovation platform that uses design to solve global challenges, engaging designers on how to reimagine the end of life experience. As the brief explains:
Each year around 55 million people worldwide and over 2.5 million in the United States face the end-of-life. In the U.S., the end-of-life experience has shifted dramatically since the 1950s, as death has moved away from the home into institutions like hospitals and nursing homes. By the 1980s, less than 17% of people died at home. We believe the people and unmet needs behind these numbers inspire a huge opportunity for design.
Core77 spoke with Dr. BJ Miller, an advisor for the OpenIDEO challenge and Senior Director and Advocate, Zen Hospice Project, and Dana Cho, IDEO partner and Managing Director of IDEO Palo Alto, about their work, insights from the stories collected on OpenIDEO in the first phase of the challenge and how design can truly make an impact in people's end of life experiences.
Hear Dana Cho speak at the upcoming Core77 Conference, taking place in Downtown Los Angeles September 29-30. Share your ideas around designing for one's final days by participating in the OpenIDEO challenge here.
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Core77: Why did you decide to open up this topic to the larger design community through the OpenIDEO platform?
Dana Cho: During early conversations with BJ around the role design could play in the end-of-life experience, I remember feeling the need to qualify my opinions and ideas by starting a lot of sentences with "I'm not an expert" and "I'd love to hear what you think." Because death and dying are serious, heady, taboo topics, I didn't feel instant permission to brainstorm and explore ideas around the topic. I naturally deferred to him during our conversations. He is the palliative care physician, after all! I'm just a designer. However, he reminded me that we are all experts (and novices) in death and dying, in our own right, because we will all experience it for ourselves and in the lives around us. So, we all know everything about it, and nothing about it.
Death is the ultimate field-leveler. So we all have a role to play in reimagining the end of life experience. The challenge is that it's a topic people tend to avoid. The OpenIDEO platform is designed to invite participation in a collaborative, creative, step-by-step process that helps break down the meatiest of challenges into accessible chunks. The OpenIDEO community leverages a global network of entrepreneurs, students, designers, seasoned professionals and everyone with an interest and passion. We found incredible partners in Sutter Health, the HELIX Centre and the Ungerleider Palliative Care Fund. With these partners and advisors, our process and a global network of collaborators, we can bring action and design to a topic that desperately needs it.
In the United States, it seems like the end-of-life experience is so personal—even within a single family there might be just as many ideas as people for what constitutes an ideal final time. In your experience, where do you see the most opportunity for design to make an impact?
BJ Miller: I especially see opportunities for design in infrastructure—everything that surrounds us when we die. Statistically speaking, many of us will die in hospitals. Why are hospitals so ugly? Why have no serious architects taken on these intense buildings? I remember Michael Graves' quote about this predicament—something like, "I can't die here—it's too ugly." And perhaps worse, why are theses buildings so frigging tortuous to navigate? I'd give up some aesthetic gratification for higher functionality in such settings (even though there's really no need to sacrifice one for the other), but unfortunately these places are designed for the technicians laboring inside them, not for patients and families.
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Besides a fresh approach to the acute-care setting, there's a vast need for non-acute care settings: nursing homes, rehab centers and the like. Here is the greatest opportunity since most of us will die from chronic illness, and since these places are actually meant to be lived in for extended periods of time, and ostensibly the technical burden is less urgent and daunting to accommodate.
Beyond these conventional institutions, I'm excited about the potential to invent completely new types of places—residential care centers (which require a different licensing and regulatory structure) and adult daycare centers. Here, away from the precarious nature of medical settings, the goal can be living well in earnest.
And then there's the infrastructure that is not bricks and mortar. For god's sake can't we get a better electronic medical record system? And how about new and immediate ways for advance directives to find their way to first responders? We need to design the "glue and flow" across the entire patient/provider experience—accessing services, traversing the system with special attention to moments of transition across care settings (for example, moving from hospital to home care) where so much goes awry.
And of course product design. There's nothing sexy about durable medical equipment! Not, at least, as generally currently conceived. "Orthopedic shoes" is a pop-culture put down. But assistive devices should be loved by their users and look the part. There's so much room for style and playfulness to enter the picture. That stuff ain't fluff - it's therapeutic for the user and sends a wonderful, perspective-shifting signal to the public.
DC: I love that, in one breath, BJ has covered everything from our information systems to durable medical equipment! That's what makes the design challenge so rich. To be sure, the experience is personal, by definition, so the goal here isn't to create a single solution. Systemic challenges can rarely be solved by a single silver bullet. Rather, the opportunity areas that have emerged from the OpenIDEO challenge represent a broad spectrum: Connectedness, New Values, What Surrounds Us, Planning Now, Services & Care, the Cost of Dying, and After Death. What Surrounds Us describes the opportunity area to impact the physical and sensorial experiences in the end of life. Services & Care addresses the medical ecosystem and the underlying services that are critical to enabling a human-centered end of life experience. These opportunity areas, together, attempt to tackle some of the most under-served parts of the system today, which is why we're so excited about the potential impact for design.
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There's been a significant body of work around redesigning the hospital experience for patients. But for a dying person, the ways in which they experience their surrounding environment can be challenging. a) What are some of the key sensorial experiences designers should consider when reimagining the way a dying person experiences their surroundings? b) What are some examples of design interventions that you consider successful and why?
BM: To get into this realm, first realize that aesthetic experience, sensuousness, is so appealing here because it is direct. As such, you don't need to ponder it (though that can be fun too). You don't need to have your intellect in tact to feel and experience the world. You don't need memory or meaning. It's fine exactly as it is. Not on behalf of anything else. The senses offer a true and whole experience. They transmit the experience of being alive. And, finally, the senses don't require time, not much of it anyway. So aesthetic experience is an important route toward the great goal of living all the way until death. I'm hopeful that designers, when you think about it in this way, might feel liberated to let loose their creativity.
As for examples of design in this area—it's all still quite rudimentary. Dying is so young a focus for American healthcare and civic habit. One of the exciting things is the ridiculous amount of opportunity for beauty, innovation, disruption, play, acceptance, shift, trans, wildness, cultivation, unity. This is an underdeveloped yet ubiquitous issue. For an example of serious architecture (architecture for its own sake, as well as on behalf of inhabitants' well being) there's the series of Maggies' Centres in the UK. There are other examples of applied architecture for people of differing abilities, too.
The senses offer a true and whole experience. They transmit the experience of being alive. -- BJ Miller
Aromatherapy, music thanatology, sunlight into a room, a breeze through a window—I love any example that celebrates the experience of experiencing while one still can. What a way to honor the body, as itself and as a transistor. A great version of all of this is the food that comes from the Zen Hospice Project guest house kitchen. Or the Greenhouse Project's embrace of animals in their nursing homes. Part of dealing with illness and foreshortened life has to do with inspiration and engagement with the world—otherwise, we just have an unnecessarily depressing series of little deaths before our big death. Winnowing of life by nature is far more agreeable than it is by design.
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In our current technology-obsessed culture, what role do you see current technologies playing in easing people's end-of-life experiences?
DC: I had a conversation with a palliative care doctor recently and I asked him if telemedicine (the ability to interact with your healthcare provider remotely, typically via Skype/video conference) had any relevance in palliative care. I was skeptical, to be honest, since palliative care, in my understanding, seems so very much about eye-to-eye, almost knee-to-knee presence. He described to me a scenario where he had FaceTimed a patient who was too unwell to make it to the hospital. The patient was lying in bed, with an iPad propped up on his chest—you can imagine, the way any of us would watch Netflix in bed. He said it was one of the most connected, charged, high-quality exchanges he had ever experienced, and it was very much because of technology. The form factor and interaction of the tech-enabled experience created a very intimate setting—no more than 6-12 inches from someone's face. Literally sharing a bed. Although, at times, it feels easy to discount technology because some aspects seem to de-humanize or create barriers and distractions between people, I'm excited by the possibility to be shocked and surprised by what kind of new and better experiences may be afforded by technology.
We've already seen some great stories and ideas shared via our OpenIDEO challenge. Venus, an OpenIDEO contributor, shared with us an inspiration around role-play games at the Journey Life Centre in Hong Kong. Game design has the potential to fuel new ideas around empathy—would first-person participation in an experience of dying help us embrace death better?
Shane, another OpenIDEO contributor, shared with us an experience of remembering his grandmother through looking at his Wechat history. Can someone's digital trail enable the chance to say "goodbye" even when there's been a sudden death? These inspirations helped us form opportunity areas, and ultimately, they're seeds of new solutions we want to pilot.
By Claudia Bicen
A sense of emotional connectedness—whether it is to people, things, places—is critical in people's final time. What are some ways that designers can contribute to forging this sense of belonging in a person's end-of-life-experience?
BM: Yes there is a great dance-y exchange that happens—a re-proportioning—between connection and disconnection. Both will happen, so design for it. There is a physicality to connection. Down to the atoms of the neurons. Connection is potent among humans for sure. And it's also often complicated in our messy human way. "Social connection"—especially when heading out of this body and back into the elements—should not be limited to humans and humans. There are connections we feel both to animate as well as inanimate objects—the feeling of "wow" we have with dogs, horses, cats, plants, art, locomotion, the night sky, et al. So keep in mind how huge your palate is. Offer raw material for connectivity and let the person, their family and all involved, do with it whatever they will. In other words, patients and families complete the arc—we as care providers and designers merely help set the stage, and stop just shy of enforcing any particular way of dying or type of connection or mode of meaning making. Finally, foster an ethos of inclusiveness and all that makes inclusion possible—acceptance, forgiveness, understanding, affection. Take care to not orphan anyone or anything, for the subject of mortality demands it.
What outcome are you aiming for in this OpenIDEO challenge?
DC: As a designer, it's easy to have lots of ambitions about what we might accomplish—new experiences, new spaces, new services. It's a wide open field. And the exciting part is that with our partners and advisors, there is good potential to pilot and implement final concepts that are developed through the OpenIDEO process. However, the most valuable thing I've learned in our journey with BJ thus far is that one of the most important things we can accomplish is just starting the conversation. Breaking down barriers to consider that death will happen, and that it might be in our best interest to be prepared and imagine what we would want for ourselves.
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BM: That's right. And the next best thing is to raise our collective expectations for how we can die—that's the thing right now. It ain't a matter of whether, but how. We don't even consider that there might be options for us. Which may not be a terrible thing, since the options out there today are few and pretty crappy. If, through this challenge, we can think bigger and expect better, I'm hopeful that the laws of supply and demand will create new, fascinating, unexpected, sensuous experiences that celebrate how we live—that indeed allow for life—right up until the moment we die.
And one more small but crucial point here: promoting creativity and possibility is wonderful and right, just as long as we don't make people feel bad for feeling bad. Our human-built systems should strive for better, but there comes a time for us as individuals—as patients—when striving is no longer possible or helpful, and that's ok. Here is the loving kindness necessary to temper our ambition. This two-part notion is at the heart of the phrase: let death be what takes us, not lack of imagination.