Can Death Be Designed?
My father died over 10 years ago in a hospice in Northern England. I was living in California at the time and as it became clear that he was close to the end, I called to say I was getting on a flight to London the next day to come see him. “Please don’t,” he said calmly. “I don’t need you to see me like this.” We said goodbye. He died two weeks later.
It wasn’t easy for me to respect his wishes and stay away, but in that moment I understood that my father was doing something I do every day — he was being a designer. He didn’t have many tools of the trade left: paralyzed with bone cancer, he was wired to the wall and unable to move — but he could still make a decision to spare me an image of him in a painfully diminished state. He didn’t want to be remembered that way, and this was the one small way in which he could still design his own death.
I’ve been thinking a lot about this idea lately. I know that we can’t choose the what, why, or when of our death, but can we do more to design the how? I’m a 50-year-old creative director: my whole career, my whole life I guess, has been about designing the things around me, hopefully for the better. Circumstances are telling me that I need to start bringing some design to my own end: my partner Jim is fifteen years older than me, I am the youngest child by 10 years (a happy accident of my parent’s later life) and we have no children. It’s highly likely that I’ll be there at the end alone. I used to be terrified by this notion; now, I’m strangely exhilarated.
It’s time to start thinking creatively.
Another example of a small, but meaningful end-of-life gesture is Lou Reed, one of my musical idols growing up. He left behind a powerful creative legacy. None more so than the way he died, as described by his wife Laurie Anderson, who wrote a moving obituary in Rolling Stone:
“He didn’t give up until the last half-hour of his life, when he suddenly accepted it — all at once and completely. We were at home — I’d gotten him out of the hospital a few days before — and even though he was extremely weak, he insisted on going out into the bright morning light….I was holding in my arms the person I loved the most in the world, and talking to him as he died. His heart stopped. He wasn’t afraid. I had gotten to walk with him to the end of the world. Life – so beautiful, painful, and dazzling — does not get better than that. And death? I believe that the purpose of death is the release of love.”
In a talk I gave last year about ageing, I quoted Reed’s obituary, turning it instead into a question: “How Might Design Walk With Us To The End Of The World?” Afterwards, many people said they found the idea of wresting back control at the end of life to be a powerful notion — of designing their own death.
One person who’s trying to advance this conversation is Dr. BJ Miller. Introduced to me by a colleague who was designing prosthetics, Miller is one of the most compelling, compassionate people I have ever met. As a sophomore at Princeton, he jumped on top of an electrified train on a dare. The current caught his wristwatch, grounded through his body, and burned him badly, costing him an arm and both legs below the knee.
Being a trilateral amputee hasn’t slowed Miller down. He competed in the 1992 Summer Paralympics, went to medical school, volunteered abroad, and cofounded a tea company. His own brush with death, ongoing pain, and subsequent reconciliation with it, have drawn him into palliative care, a practice he now uses daily as director of The Zen Hospice, a small but significant palliative care facility in San Francisco.
Miller is erudite in the extreme, both pragmatically as a physician, and also philosophically and spiritually. In our first meeting, he talked about death as “a crescendo of life, not an ebbing away.” We quickly started riffing: on the value of aesthetics in the palliative care process; on helping create sensorial experiences for the dying; of taking charge of the final act, and again on that phrase: designing death. He wrote me an email that compared dying to other non-negotiable parts of life, like eating and finding shelter:
“Think of all the cultural significance and artistry and labor that goes into [eating,] this necessity-turned-delight. I’d say that humans have thrived by turning every need — every vulnerability — into something beautiful in its own right. Think of architecture’s response to the need for shelter. The domain of how turns the compulsory into opportunity.”
As a designer, I was challenged and inspired by our talks. As a human being, I was both calmed and humbled.
It was an exhilarating, profound, and frankly, terrifying conversation. We decided it would be a good idea for a group of us at IDEO, where I work, to sit together, talk about death, and see if there was an opportunity for us to collaborate, hopefully to bring design in a meaningful way to the end of life experience.
Still, I felt hesitant to bring it up at work. Death is a tricky topic — deeply personal. Who did we think we were to take on such a complicated issue? Could we possibly challenge hundreds of years of dogma, and in some cases, law? But my colleagues surprised me with their enthusiasm to take it on. And, as designers will do, they rose to the occasion by building a “death yurt” in which to have the conversation. We invited BJ and his team to walk through a long dark tunnel into a small candlelit room. Then 12 of us sat there in the darkness and shared personal stories, theories, and ideas. We brainstormed tools and services we could design to make the end of life better — more human. The space was hot, cramped, deeply intense. It was perfect.
As a homework assignment, each of us was asked to “redesign our funeral.” I told the story of my father, of wanting silence and solitude at the end of my life, of a retreat to the farthest corner of the world to see the Northern Lights dance over my head, to die with the cold air on my face, to see, smell, touch, taste and above all, feel my own death.
The conversation swirled with the legal, religious, and moral implications of my doing so. It was probably an impossible dream, but everyone suspended judgment and helped me design a pagan end. I felt excited. Death felt like something that, while not aspirational, could at last become something closer to how I lived. As a designer, I am used to reframing challenges as opportunities, to applying beauty and emotion to rational ideas in order to improve things — could my death somehow embody those values?
So, now what? Well, for me, writing this is a first step. I’m committed to discussing death out loud. I know this is land mine territory, believe me. But IDEO designers are ardent believers in topics that will have both personal and social impact, and hopefully business value as well. Our laws and regulatory systems impede what a lot of us want to see change — there seems to be nothing but grey area when you enter the Bermuda Triangle of morality, law, and religion. But years of designing increasingly complex and nuanced structures in healthcare, government, and education have taught me one thing: that you have to start somewhere and ask the tough questions — no matter how naïve you may seem. You have to remain optimistic about the possibility of change. I feel that way about death. And above all, I also know that I don’t want to die like my father, wired into the wall under a fluorescent hospital glow, people hovering over me. I don’t think I’m alone.
