Dr. BJ Miller’s own brush with death — he received an accidental electric shock and became a triple amputee — led him to practice and teach palliative medicine at the University of California, San Francisco, and deliver a viral TED Talk on end-of-life care.
He teamed up with journalist Shoshana Berger, editorial director of the design firm IDEO, to write “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” to help people navigate a life stage that many would prefer to deny.
The handbook covers both the logistical and emotional aspects of preparing for death: from hospital hacks and what documents to put in your When I Die file, to techniques for breaking bad news. We spoke with the authors about how to make preparing for death less difficult and more meaningful.
Q: You two met when Shoshana was reeling from the death of her father, after having served as his caregiver. How did that experience inspire the book?
Shoshana: My sister and I ended up literally sitting down at the computer in the room where my father lay cold, and Googling, “What do you do when someone dies?” That encapsulates how little preparation we have, and how little we know about this experience. It’s become so exotic to us because we’ve kind of cordoned it off. I thought to myself, a lot of people need help with this — we can’t be the only ones who are completely at a loss.
Q: Why is our culture so hellbent on avoiding death?
BJ: Death is scary. We’re wired to run away from it, so there’s no shame in that. But you can tell that America is a young culture by the way it handles aging and dying — that it’s something you fight, not come to terms with. Also, this country has grown up during the technology revolution, which is all about finding some human-built way to usurp nature.
Q: How did your backgrounds inform the book?
BJ: Being at the bedside with a zillion patients and families obviously informs my experience, but most of what I’m drawing upon besides my clinical experiences is my personal experiences as a disabled person dealing with things I can’t change, and trying to find a way through things that are very difficult in dealing with loss.
Shoshana: There are 45 million caregivers in this country, who are an invisible workforce doing this work that we’re born to do, to take care of each other. And yet it’s not really valued in our culture. Families have become increasingly fractured and intergenerational caretaking is not built into our experience the way it once was.
So, again, this is one of those experiences that have become somewhat unfamiliar and exotic because we do less of it, and we don’t talk about it, and it’s not seen. So we wanted to bring that perspective into the book because we wanted people to feel less alone.
Q: How does the book reconcile the way death is both universal and individual?
BJ: We wanted to give a sense of the parameters and the themes that you’re most certainly going to face along the way and offer some guidance. But what we’re doing is really empowering people to find their own way, in a way that is meaningful for them.
We want to make sure people understand this isn’t just, “Read our book and connect the dots and you’ll get to death, no problem.” You’re going to go no matter what you do, and you have a lot of freedom in how you get there — that’s what we really want to unlock in people.
Q: How has writing this book changed the way you approach your life?
Shoshana: It’s made me a lot more aware of the brevity of life and the preciousness of life, and I now don’t leave the house without actually hugging and kissing my children and my husband. I really tend to not sweat the small stuff anymore. It made me feel more like, “OK, we’re gonna live it up and follow our hearts here because we have nothing to lose and before you know it, it’s gonna be over.” That may sound a little bit morbid, but it actually enlivens me and makes me less fearful and more engaged in life.
Q: What do you wish you could change about how Americans view death?
BJ: If we roped death into our view of reality, instead of it being this exotic foreign invader that’s coming to take us away — otherwise we would live happily ever after — and see that it’s actually part of life and inside of you. I think that makes a huge difference in terms of how this experience for people plays out.
Shoshana: What drives me crazy is when I tell people we’ve written this book, and they say, “Oh, God, how depressing. Can’t we talk about something more pleasant?” Including my own mother, who just hates talking about this stuff and wants to change the subject immediately when I try to bring it up.
I wish that people could accept this as a part of our whole life experience just as we accept births and becoming a teenager and graduating from college and getting married and having children and all the other big life cycle events we have.
Q: How and when should people start preparing for death?
Shoshana: Creating a When I Die file. You can put all of your stuff into a shoebox, or a file, or a cloud drive that’s going to make it so much easier for the people you love to deal with it when they lose you. Because they are going to be in the thick of grief themselves and then to have to call Verizon and sit on a phone tree for an hour is just adding insult to injury.
So having all your passwords in one place, your advanced directive, your will and trust, and then some softer things that you can add, like writing a letter to the people you love.
This is not a book for old people. This is a book for everyone. It always feels too early until it’s too late.
BJ Miller will give a public talk at the Minnesota Network of Hospice and Palliative Care conference on April 6, 2020. For information, go to mnhpcconference.org.