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Death, Dying, and Design: An Interview with Elaine Fong

May 18, 2018

Elaine Fong’s mother, Christine, was a woman of many talents and identities: a hard-working immigrant; a devoted mother; a Beatles fan; and, in her final months, a death designer.

When Elaine, a designer herself, reached out to us and shared the story of Christine’s decision to use the Washington Death with Dignity Act to end her suffering from Stage 4 bone cancer, we hadn’t heard anything quite like it. We invited Elaine to share her unique perspective on death as a design challenge, and design as a field that, like end-of-life care, requires “a combination of creativity and empathy.”

This interview has been edited and condensed.

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Death with Dignity National Center: What first drew you to the field of design?

Elaine Fong: Growing up, I was always interested in art, but having traditional Chinese parents, I was encouraged to pursue it as a hobby, not a profession. My parents were striving immigrants; they wanted what was best for their children. Compared to being a doctor, lawyer, or engineer, being an artist was not a lucrative career in their eyes.

When I was a senior in high school, didn’t know what I wanted to study. At the time, the eldest of my two sisters was working at Microsoft. She told my mom, “There’s this thing called graphic design. Elaine could get a job designing websites.” She framed it in a way my Mom could see as lucrative. As a result, my mom said, “Go for it.” I was very fortunate to have guidance from my sisters.

Elaine Fong

Elaine Fong giving a TEDx San Francisco talk about her mother’s death

Death with Dignity: Did you end up studying design in college?

Elaine Fong: Eventually. I stayed close to home and went to Louisiana State University in Baton Rouge for a year, then transferred to an art school in Florida, which had an impressive roster of recruiters: Pixar, Universal, and similar companies.

At that time, the Internet was just beginning to get huge. Through exploring online, I got a sense for what real graphic design was and how I wanted to use it outside of college.

A real turning point for me came one evening in college, in a really unexpected way.

I was sitting on a stoop with a friend who was holding a pack of Camel Reds. I saw the cigarette package and thought, it looks like a Piet Mondrian painting. I saw how graphic design could take a creative concept and apply it to a commercial product to speak to someone on a personal level. There was an intention of enjoyment and delight in the appropriation of plastic things into pop culture.

I still have that Camel Reds package.

Death with Dignity: So you turned your passion into a profession.

Elaine Fong: I moved to Cleveland and worked for American Greetings, then relocated to Chicago and worked first for a small ad agency and, later, for Paper Source, a national stationery and fine paper retailer.

In 2011, I landed a job at IDEO, an international design firm that really pioneered the concept of human-centered design. That was where my career shift happened in terms of focusing on designing for empathy. It’s a core part of their values and what they have to offer their clients. I found myself thinking about service design, hospitality, and brand design as practical business tools to speak to clients on an emotional level.

Death with Dignity: Did you work on any projects related to healthcare during your time at IDEO?

Elaine Fong: I did. I worked with a client who created a product for patients with immunodeficiency disorders. These were patients who had to do at-home infusions that could take hours of time to get their bodies an appropriate fluids and medications.

In order to understand what patients were going through, we would go to their homes and do in-depth interviews. My team and I talked to four kids who had an immunodeficiency disorder. We documented the process and the pain points that they went through. It took hours for an IV bag of meds to flow through their bodies. They felt trapped at home.

The goal of the project was to design a better at-home kit that could help them easily take meds for themselves and also be able to live life and be out and about in the world. In order to do that, we had to understand what they were going through when medicine was flowing through their body, how that affected the things that they did. If they felt shame, if they felt alienated, we wanted to know and be sensitive to that.

Death with Dignity: Was there a particular experience you had at IDEO that informed your own thinking about death and dying?

Elaine Fong: In the months before my mother was diagnosed with Stage IV cancer, I was working at IDEO’s Palo Alto, California office. At the time, IDEO was collaborating with the Zen Hospice Project in San Francisco. BJ Miller, the organization’s executive director, had given a talk at the Chicago office about death, dying, and palliative care. It really hit home for me.

I had never heard anyone talk about death the way he did: that it’s hard, it’s scary, but it’s very meaningful, and can even be beautiful. His work showed me that we as a society have the opportunity to reframe the conversation around death.

I had the opportunity to go to the Zen Hospice Center. It was a beautiful space. I was very inspired by how it had been designed to provide comfort and beauty to its residents. I feel fortunate that I got to work on that project when I did. It prepared me for the conversations I would have with my mother soon thereafter, as she made the decision to use the Washington Death with Dignity Act to end her life on her own terms.

Death with Dignity: You were kind enough to share your mother’s story with us as well as in a TEDx San Francisco talk. Briefly, what about your mother’s work to plan her death reminded you of the work you do as a designer?

Elaine Fong: It’s easy to think of design as being purely about aesthetics. But design can also be a tool for communication. Human-centered design is a combination of creativity and empathy. My mother’s end-of-life planning was at its heart a design challenge. It required her to articulate her plans for her final days, and it required us to talk about it to make the decisions that would help her fulfill her wishes. Having that conversation allowed us to develop a shared language.

I told my mother, “I’m really proud of you. I think you’re brave. I also think you’re a designer like me. You’re creating the experience you want to have. You’re designing how you want to say goodbye.”

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