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We design our life. Why not design our death?

From our need for shelter, we’ve built Fallingwater; from our need to eat, soufflé. What art of living could we occasion out of knowing we must die?

We design our life. Why not design our death?
[Photo: okeykat/Unsplash]

The morning my father died in my sister’s childhood bedroom, she and I sat down at the old desktop computer a few feet away from where he lay cold and Googled: “What do you do after someone dies?”

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I thought I’d seen a lot of death. My college roommate overdosed. Two boyfriends were taken by colon cancer (what are the odds?). A close friend collapsed on the last stretch of the San Francisco Marathon—all before I turned 36.

I loved them all, but had no part in their caretaking—roles filled by their immediate families. We were my father’s immediate family, and we had no clue what to do.

It didn’t even occur to me to call a funeral home to pick up dad’s body. Was there one nearby that he preferred? That local place with fluted Corinthian columns flanking the doors? He would’ve winced at its immodesty. There were holes in the lining of his corduroy blazers.

Where did he want to be buried? A Jewish graveyard no doubt, but I honestly didn’t know of one outside the crumbling tombstones I’d visited after college in Prague.

He’d left no instructions. And what we needed more than anything right then, when we couldn’t see through our tears, was bold-print instructions.

[A Beginner’s Guide to the End by BJ Miller, MD, and Shoshana Berger]
As a professor of engineering for 50 years, my father had taught my sister and me many things about how the universe worked. We knew the difference between laminar and turbulent jet wakes. We understood how blood flowed. The one thing he couldn’t teach us was how to help him have the death he wanted. The death of his brain before his body was an outcome none of us were prepared for.

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And yet, we suspected that was coming, and not in some distant future. At first it was just the failure to calculate the tip on a restaurant tab. It wasn’t long before his colleagues politely suggested that he retire. They’d pulled him from the elevator, where he’d stood frozen, not knowing which button to press, the doors opening and closing repeatedly. He was 73.

Today, medicine has godlike powers, able to interminably delay the end as machines prop up our organs for us. When death finally does come, it is cordoned off behind yellow caution tape, and we, the people witnessing it, are forced into a crash course for beginners.

I started working at the design firm Ideo three months before my father died. In the thick of grief, I was assigned a project to rethink the end of life experience. Our client was Dr. BJ Miller, a palliative care physician who was then the executive director of the Zen Hospice Project.

To kick off the project, 10 of us sat around a low candlelit table in an igloo-shaped roundabout—my coworkers ribbed that we’d created a “death yurt”—and had a conversation about how we pictured our last moments. Having come from hard-boiled journalism, I was not used to meetings in which everyone cries.

That morning, BJ shared his vision of what dying might look like if we designed it more intentionally. Having had a nearly fatal accident by electrocution at 19 that cost him half an arm and both legs below the knee, he had seen death up close in a way that radically reframed his life. It was this hardwon perspective that led him to become a doctor.

BJ urged us to think about how we might play with our condition of being mortal—being creative with the fact of it—in the same way we’ve transformed all of our most basic human requirements. From our need for shelter we’ve built Fallingwater; from our need to eat, soufflé.

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What art of living could we occasion out of knowing we must die?

After working on that project with BJ, it struck me: If someone like me, an educated native English speaker, had to Google death, there must be a lot of people who could use some help.

One thing I learned from my experience with my father was that I need to talk to my kids and my husband about what I want should I lose my mind. I inherited my father’s legs and wily eyebrows and stubbornness. If my genetic testing proves correct, I may inherit his dementia, too.

So I’ve started to write detailed notes about how I want my life to go should I no longer be able to recognize my kids and eat a baguette or go to the toilet by myself.

If those things happen and I catch a virus, I want to allow that virus to progress naturally. I want to be kept comfortable but have no treatments or antibiotics or hospital visits. If I fall and break an arm, I’ll take a cast, but no surgery.

I told my husband all this, and made sure he heard, even though he hates talking about it.

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And if I change my mind about any part of those instructions as I get older, I know that as the designer of my own life I can always tear it up and tell everyone that I’ve decided I want all the drugs and Ensure milkshakes and don’t really care if someone else has to wipe my ass.

I now know that dying doesn’t mean I have to hand myself over to doctors and hope for the best. There are practical steps I can take to be an active designer of my own end and to help my family navigate it.

I’ve also let my children, who are 11 and 12, know that because I’m claustrophobic and irrationally spooked by the thought of being laid to rest under a mound of dirt, that I want to be cremated and be let loose in the hills of my local park, where I camped as a kid in the eucalyptus groves and have returned throughout life to clear my head.

No, it’s not exactly legal to scatter ashes in a public park, but I trust they’ll find a quiet spot on a weekday.

Though none of us can be sure when we’ll die or how, and our circumstance may yield us very little control or say in the matter, it feels awfully good to sketch some things out.

And once you do, tell the people you love, so they don’t have to Google it.

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Shoshana Berger is co-author of the new book A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, with BJ Miller, MD. 

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