Diane Button was just 15 years old when she started volunteering — then working — at Nazareth House, a convalescent home just a short walk from her high school.
She learned the names, birthdays and special food requests of the home’s residents, and when some of them became bedridden, she’d sit by their bedsides and listen to them share their stories and photos from their lives. Some were at peace, others had regrets, but she learned early on that just giving someone the chance to tell their story could be healing.
It would be the first step in uncovering her life’s work: supporting people to find meaning, comfort, joy and peace in life and in death as an end-of-life doula, a “companion for the dying,” which she’s done for around 20 years.
Her work — and the lessons she’s learned from her patients, whom she calls “wisdom keepers” — inspired the Novato author’s latest book, “What Matters Most: Lessons the Dying Teach Us About Living.”
Each chapter focuses on a different client, like Floyd, whose search for connection with his medical providers at his weekly doctor visits shows how small acts of kindness can make a difference; Rosie, a 6-year-old who makes every day feel like a celebratory event; and Sally, who realizes the importance of expressing gratitude.
“The sad part about my work is that all my clients die. The beautiful part is they all leave so much of themselves behind for us to learn and grow from,” writes Button in the book, which was encouraged by Maria Shriver after an article Button wrote in Shriver’s Sunday Paper about the 10 lessons she’s learned “about living from the dying” went viral in 2022.
The book, writes Shriver, “will bring you peace and remind you that it is never too late to work toward a meaningful life.”
In it, Button also reflects on being diagnosed with and going through treatment for breast cancer, the most spiritually meaningful moment of her life and the tools for living well.
Button is a founding partner of the Bay Area End of Life Doula Alliance, and started a nonprofit with her then-young children, Dream of a Better World, after her breast cancer diagnosis to help underserved children and families around the world.
Q: How did this all begin?
A: That piece really struck a chord in so many people. Maria and I were getting letters and people sharing their stories with us, and it made us realize that these things that sometimes people are afraid to talk about are the exact things that we need to talk about. It started a conversation, and then it turned into Maria inviting me to write a bigger book about what matters most. I hesitated because I’d already written three books in four years, and I didn’t know if I had much more to say. But then when I realized that my clients had a lot to say because they taught me so much, I shifted it. I made the book stories through the eyes of the clients, and I think it’s a lot more powerful.
Q: Did you feel like a vessel to share their stories?
A: That’s exactly what I felt. All of my clients in that book have since died, but a lot of the family members and loved ones are still alive, and some of them even came to my recent Book Passage event. You build a bond with these people that lasts a long time, especially if you were there holding their hand when they died. People remember that. People reach out to us sometimes years after a death. I feel like a vessel because I try to stay out of the way. I try to be a companion, but not a leader. I’m walking alongside people as they’re dying and walking alongside the people who need the support. I show up in whatever way I can. I never know what any day is going to be like at my work, because I don’t know if people have changed or declined or if there’s family members who are struggling more than the person who’s dying themselves, which is often the case. I’m always taking it all in.
Q: Do you feel like every client shapes you?
A: Absolutely. Every single person who I work with has changed me, so now when I leave the house, or especially after a death, I pause and I take it all in, like, what was that there to teach me? There’s always something, even if it’s understanding that words are powerful tools and to be thoughtful with your words. I’ve seen sadness happen at the bedside as well as hard conversations and arguing. It’s not always this beautiful bubble of wonderful that every family goes through. There are a lot of family dynamics and issues that people have to deal with at the end of their lives. But, we learn from that just as much as we learn from the love and the sweet times.
Q: That’s part of the human experience.
A: Exactly. The thing about it is, we’re alive up until the very last day. A lot of people ask me, what do you prefer, death doula or end-of-life doula? I always say, “I like end-of-life doula because death is just one day.” I don’t want to be just a death doula. I want to be an end-of-life doula so that I can walk with my clients through those stories, through those hurts, broken relationships, unfinished business, phone calls that weren’t made and letters that weren’t written. I want to be able to walk with them and journey with them through all of that hard stuff to get to a place of comfort and peace at the end. That’s, to me, the beautiful part of our work.
Q: When did you get interested in what makes a meaningful life?
A: I got my master’s degree in counseling so that I could study existential psychology and what makes a meaningful life. I’ve always been interested in that, but it didn’t really sink in until I became an end-of-life doula and I started sitting with the dying and I started hearing their stories and I started realizing that there’s a correlation between peace and calm and comfort at the end of life and people who have done their work all along. People who wait until the end of life to say “I’m sorry” or “I love you” or look back wishing that they’d done all these things, it builds up and then it becomes very urgent rather than doing it all during the course of your life. If I were to die tomorrow, I know that I would be OK because I’ve said all the things I need to say and done the things that I feel like I need to do.
I always ask my clients, “What do you worry about when you lie awake in bed at night?” The reason I ask that question is because then I don’t have to say, “Are you afraid of dying? Are you in pain? Do you have any unresolved friendships? Is there something you always wanted to do that you didn’t?”
That usually gives me so much insight into what’s keeping them from having peace, and we can work on that.
Q: How have you been changed or shaped by this work?
A: I’ve definitely learned how to pause and be in the room fully. It started with my clients. I would do a little exercise of leaving my troubles, my cares and my worries behind when I stepped into the door so I could be completely and fully present for my client. But then I would leave, and I would get back into the insanity of my life. I realized one day that I wanted to carry that same presence into my own life as I do when I’m with my clients. And so now I’m very present.
I really learned how to tell people I love them and just do the little things that make a full, meaningful life over time. A lot of it is paying attention to the simplicity of an ordinary day, which was one of the 10 lessons in the article for Maria. I try to pay attention to and be grateful for the plants in my yard and the phone call with my mom — whatever moments aren’t necessarily the big fireworks, but just the simple moments.
Q: Did your experiences with loss and your journey with breast cancer influence your work?
A: I do think that when we’ve experienced grief and loss or we’ve experienced cancer or a life-threatening illness, we do have a sense of understanding that other people don’t have. My breast cancer was advanced; it was in my lymph nodes.
I started writing letters to all of my kids for them to open on their 30th birthday, their 40th birthday and their wedding day. My kids were 7, 9 and 10 when I was diagnosed with breast cancer. I got super sick with the chemo, and I didn’t know if I was going to make it or not. I was having some heart problems, and I just remember writing them letter after letter and really projecting what I would want to say to them if I was there sitting by their side on their wedding day or on their college graduation. I was just actually looking through it recently. Now they all have a big stack of letters to open at various milestones of their lives.
That was my way of just really leaning into my grief but also accepting that I might not be there. But I think that going through that experience has really helped me to support other people when they’re thinking about what legacy they want to leave behind. I do letterboxes with people all the time. It brings a lot of joy to people at the end of life. What I’ve learned the most through my own journey is that everybody wants to be remembered, and they want to be remembered for being a good person, being kind, showing their love and making the world a better place.
Q: Has writing always been therapeutic for you?
A: Definitely. I think part of the reason why the book flowed out of me was that when I come home from a death, I’ll journal. I’ll sit down and write things from my heart about how I felt. That’s my standard practice for self-care.
People are so afraid to talk about the end of life but don’t realize that talking about the end of life is really talking about life. And if you are willing to have the conversations and to think about what is most important to you, you can live your life differently today so that you can have peace at the end of your life. It’s really beautiful. You can get so much closer to people when you’re willing to have these deep conversations that so many of us try to avoid. It will open up your life so much more.