Shoshana Berger (Photo/Nicholas Zurcher)
Shoshana Berger (Photo/Nicholas Zurcher)

How to face the end of life? Start now, authors urge

You’d think “the end is nigh” the way Shoshana Berger, co-author of a new book about our last days, is in demand these days. On media platforms, in bookstores and at all kinds of public venues, people are leaning in to ask the Bay Area journalist: How should we do death?

As if death were a new phenomenon.

One reason for all the attention is that Berger and BJ Miller’s new book, “A Beginner’s Guide to the End,” is really about living. “Practical Advice for Living Life and Facing Death” is the revealing subtitle. And the book delivers.

“If you knew that you were going to die tomorrow, would you still be holding on to those grudges? Have you healed the old wounds with people that you love in your life?” Berger asked during a talk at the Commonwealth Club in San Francisco not long after the book was published in July.

Were those rhetorical questions? Who among us doesn’t live with some painful accommodation to a subpar relationship? Is there a family in existence that has no wounds, no challenges, no broken links?

Cover of "A Beginner’s Guide to the End" by Shoshana Berger and BJ MillerAcknowledging the fact that we’re all going to die — and that time is precious — is the starting point from which healing can flow and a better quality of life can begin, the authors assert.

Berger pressed the audience: “Are you showing up in your life? Are you putting down your phone and looking at the person you’re talking to in the eye? Or saying goodbye like you really mean it? Because … none of us really ever knows. [Learning how] to be really present in your life is a big reason why we wrote this book. We want people to think through these issues.”

For Berger, a former senior editor at Wired whose first published book was the 2005 do-it-yourself primer “ReadyMade: How to Make (Almost ) Everything,” death was not something she much considered — until her beloved father, a former UC Berkeley professor, slid into dementia.

Berger and her sister found themselves totally unprepared for his decline and eventual death. It was, she told J. at an interview in San Francisco at the design firm and idea incubator IDEO, where she is now a global editorial director, “a harrowing experience. We really had little clue how to navigate it” practically or emotionally.

She found solace in the traditions of her father’s Conservative Judaism and the support of Congregation Netivot Shalom, the Berkeley synagogue with which she associated in her youth and adulthood. Her mother’s secular Jewish culture, with which she was also comfortable, left a gap for her in that regard.

“There’s a reason why religion exists, and part of it is to help us through these big life cycle moments,” she said. “Because in the absence of a community — and a ritual to participate in a practice of mourning and grieving — we can feel like we’re in free fall. And grief can be terribly isolating.”

But she felt frustrated by the rigidity of the medical system she had encountered, by the demands of caregiving, and by her utter lack of knowledge about death and dying.

“We didn’t even know what you were supposed to do first, at the moment when a person dies,” she told J.

So when Miller, a palliative-care physician at UCSF, came into the IDEO office to consult about how society could benefit from a shift in the U.S. approach to death, Berger was “completely lit up.”

That meeting happened to occur three months after Berger’s father had died. “I so desperately wanted to find a way to redeem my experience,” she said.

Many of the younger people at IDEO were equally motivated to get involved, she added. It’s not just an “old person’s” issue. It’s important at all stages of life.

“More people than you’d think are dealing with death at an early age,” Berger said. “One in three people will lose someone in their immediate family before they turn 17. So this is not an unfamiliar experience to people. And I think the moment you’re touched by it is the moment of opening, when you have this window to start thinking about your own life, and how you take care of the people you love.”

Earlier, Berger had helped Miller write his own poignant story for a TED talk, “What Really Matters at the End of Life?” Presented in 2015, it has reached 9.5 million views online.

In it, Miller recounts how he started down this path at 19 when, on a lark, he and his Princeton University classmates climbed onto a parked commuter train — and 11,000 volts of electricity shot through his metal wrist watch into his body. His didn’t die, but he lost both legs below the knee and his left forearm.

“Inspiring” doesn’t begin to describe his story of recovery and how he reset his life to become a medical doctor specializing in hospice and palliative care. He was the executive director of the Zen Hospice Center in San Francisco when he walked through the door at IDEO on his carbon-fiber prosthetic legs to talk about how they could reframe death.

Part of IDEO’s response was the End of Life Challenge, a prototype social initiative that evolved into an annual nonprofit event, “Re-Imagine End of Life,” a community campaign to engage all sectors of society in new conversations about death and dying. Hugely successful, with its third annual event set for October, the nonprofit is looking to expand to New York next year.

Today, Miller is a hospice and palliative care physician at the UCSF Medical Center, where he continues to see patients and their families, honoring the indissoluble link between life and death.

“He gave me a way to see that a lot of people need help with this, and if we could give people that help it would be a great service,” Berger said. “I suggested to him that there was a book in it. And three years later, here we are.”

“A Beginner’s Guide to the End” has a lot to say, and strives to say it in a universally accessible language that avoids preachy tones or cultural bias.

“BJ and I are pretty enthusiastic agnostics,” she said at the Commonwealth Club, “but we want to hold space for people for whom their faith is key in this conversation.”

Its 24 chapters glide crisply through many topics, such as: the process of planning for death (it’s never too early to fill out an advance directive); dealing with extended and/or terminal illnesses; relationships toward the end of life; and finding help of all kinds (from medical to financial to household to emotional).

It also tackles decisions that need to be made around how (and when) to die, celebrating the life of the deceased and dealing with grief. A final chapter, “What’s Left,” deals with the physical (and virtual) remnants of a person’s life, from possessions to passwords.

One valuable offering is a 22-page listing of resources that might be useful at any stage during the process of death. It’s a journey, the 544-page book reminds us over and over, that includes all the life that leads up to our last breath.That is the time we have to love and heal and do our business on Earth.

“I think there’s so much to be said for just normalizing death,” Berger said. “We all die. It happens to us at different times in life. Let’s get to know it a little bit better so it’s not so exotic. If we talk about things openly, we tend to be less afraid.”

Laura Pall
Laura Paull

Laura Paull is J.'s Culture Editor, and was a longtime J. freelance writer before that.